eosinophilic disorders

Posted on: Sat, 02/03/2007 - 10:50am
LisaM's picture
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Joined: 11/04/2005 - 09:00

As I mentioned elsewhere, I've been wondering whether I should get checked out for eosinophilic esophagitis.

I have reflux--but it is mild, and I believe I can control it through my diet (I've cut out most foods which cause reflux. There are a few that I'm really reluctant to cut out. . . I eat them occasionally.) I think it is suspicious that I first developed reflux after being taken off corticosteroid sprays (for asthma). (I understand that these meds are also used to treat ee?)

My question is: if I *do* manage completely to control reflux through my diet, would it be necessary to get a diagnosis? Or could I just forget about the issue as long as I don't have symptoms?

I've read that people with ee can develop other eosinophilic disorders over time . . . don't know how much that would be a factor, though, in needing a diagnosis.

Posted on: Sat, 02/03/2007 - 11:05am
chanda4's picture
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I've mentioned this before, but my 3yr old recently was diagnosed with EE. It's new to me, but I have read if untreated it can cause many serious problems, including throat cancer(or even disorders of the colon). He had really bad reflux from birth, on mutiple medications and finally and endoscopy(have they done that to confirm you have ee??)
They corrected a hiatal hernia(root of his bad reflux) and we just recently did another Endo and confirmed his wrap is in tact and working(he can't even throw up, so no acid is coming up into the esopogus anymore). They are chaulking the inflamation and pain up to allergies, both inhaled and eaten.
We were going to do the elimination diet(where he's put on Neocate formula for a month and then we add one food back each month and re-endoscopy him every month...seemed very extreme. We decided to do the steriods, which you should continue if it helped(Flovent has been shown effective). I give Carson a dose for a few days when his flairs up again, this keeps it in check at least, for now.
He will be revisiting the allergist and GI team at Childrens, they have an EE specialist that recently joined the hospital. I can pass on any info they give us if you'd like. What have you had done as far as tests and diagnosis??
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)

Posted on: Sat, 02/03/2007 - 12:11pm
LisaM's picture
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Joined: 11/04/2005 - 09:00

Thanks so much for answering my questions on this.
Wow, it sounds like your family has been through a tough time. Yes, that Neocate elimination diet would be extremely difficult. And you know, I've read that some people react even to Neocate.
So even if with mild symptoms, ee definitely needs to be treated? What if you figure out all the triggers? do you still need the steroids?
One other question: I've heard that to be diagnosed, you have to be consuming foods which trigger the symptoms. Is that true?
-------------
I haven't had any testing yet. My reflux was well controlled with losec, but I've become concerned about the link drawn between the development of allergies (in those who are already predisposed to develop allergies) and prescription reflux meds. So I started being more attentive to dietary triggers to see if I could control my reflux that way . . . then I realized after doing a bit of reading that people with allergen-induced reflux and with tons of food and environmental allergies sometimes have an eos disorder. (I also have mild swallowing problems.) I've been to an ENT years ago--she said I have "laryngeal inflammation" (which I gather she thought might be caused by reflux.)
By the way, even when I have it a lot, my reflux is not severe. I just get mild burning which is bearable except when I'm trying to sleep. I rarely get reflux now---I figured out most of my triggers. There are *a lot* of them. Some things which cause reflux also cause GI issues and/or hives and/or throat itchiness.
I asked my respirologist (who was taking care of the reflux issues) about the possibility of ee---she thought it worth pursuing and sent me to a GI doctor. When I told the GI doctor that I'm allergic to wheat and that oats is one of my reflux triggers, he tested me for celiac. Long story here---but I *was* eating a gluteny diet again in preparation for the biopsy . . while he was at it, he was going to check for ee. But he ended up recommending that we cancel the endoscopy . . . one of the reasons is food-derived ingredients in the meds. (I think I'd be fine, but I think I scared him by mentioning "anaphylactic shock" one too many times.)
So later I reraised the ee issue . . . he doesn't think I have it and doesn't want to do the endoscopy.
I have a follow up appointment with my respirologist this month. In the meantime, I discussed the ee issue with my allergist. He said he doesn't think I have it. But since I was concerned, he would refer me to another GI doc. I suggested that I would have my respirologist refer me but I would appreciate recommendations . . .but although he doesn't think that ee is a real concern, he really wanted to give me a referral seeing as it takes so long to see a GI doc [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] So I have a referral to someone who is probably a good GI doc . . . who doesn't specialize in eosinophilic disorders.
To make things more complicated, I don't want to switch GI doctors because my current GI doctor is supportive of the celiac issue . . .he strongly feels that I have it in spite of the fact that I have not had a biopsy. He has offered to write a letter explaining his diagnosis should I run into skeptical doctors.
I had decided to pursue the issue for sure . . .but then I'm starting to wonder because both my current GI doc and my allergist don't think it is an issue. . .and they are both good doctors. I don't want to undergo an endoscopic procedure just because a GI doc is trying to humour me.
[This message has been edited by LisaM (edited February 03, 2007).]

Posted on: Sat, 02/03/2007 - 12:37pm
chanda4's picture
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Joined: 12/14/2006 - 09:00

Lisa...you know when this all started(my son having really bad stomach pain, up high by the sternum(sp?) as well as chronic diarrhea. His GI doc did just a scope down his throat at first(knocked out) foudn the hiatal hernia and took a biopsy of the top of th esmall intestine, to check for celiac. He was pretty sure he had it actually, but the biopsy came back negative. He had a high level of something in there, but I can't remember the name.
We were refered to a pediatric surgeon who went in and corrected the hernia, did the Nissen. Then when the pain continued this last fall, we had new insurance so we had another GI do the 2 endoscopies. The new GI never mentioned celiac again, but did have suspision to the EE....then the bumps, swelling and biopsy confirmed it.
I think it owuld be worth having the endoscopy just to rule it out. It would be easy enough, then you wouldn't have to worry if you had it or not. But with the throat swelling, that is one of the signs(difficulty swallowing). My son never had a hard time swallowing, until after the Nissen was done, then the opening to the stomach was tightened and he would cry it hurt when he ate. The steriods helped, he went sypmtom free for about 6mths.
I've been told by the pediatric GI's that being on Zantac really isn't a big deal, even long term. I haven't heard if the reflux meds caused problems for food allergies....but I have heard that allergy meds cause problems for reflux patients. That is why I took my boys off their daily Zyrtec...I didn't want it to be making the reflux worse(by relaxing the stomach muscles).
I don't know how to quote...but....
""So even if with mild symptoms, ee definitely needs to be treated? What if you figure out all the triggers? do you still need the steroids?""
I think they use the steriods just during the flair-ups(only when in pain). He's done 2 rounds at 6 weeks each round(of swallowing the Flovent). Then we stopped until the pain came back. If I give it to him for 2-3 days then stop, he is okay for a short time...so I've been doing that until we have the follow up. I'm not sure what their next course of action will be, the new EE specialist will most likely take over our case. Our current allergist and GI say this is relativly new and most docs don't really know the best way of treating EE, other then trial and error. They are hoping the new doc can shed some light and offer new ideas. We'll see.
I say do the Endoscopy, you can take a biopsy for the EE and the celiac at the same time, right?? Get it done and over for both.
I do have to comment on your comment about reacting to the procedure. My son had a bad reaction after the 1st Endoscopy, he spiked a fever, was trying to puke(wretching) several times(but can't because of the nissen) and was really out of it, they sent us to the ER...but he snapped out if it right when I signed him in...we left). I think I gave him Bendryl on the way, but I can't remember. The next time we went in I talked with them, they thought maybe it was an allergic reaction.....but after reviewing what had happened, they thought if it was an allergic reaction he wouldn't have just snapped out of it, he would have needed to be hospitalized for a couple days, so they chaulked it up to being a fluke. The 2nd time he had no problems what-so-ever. Just thought I'd share that. Good luck, I'm hear to chat if you need!! HUGS
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)
[This message has been edited by chanda4 (edited February 03, 2007).]

Posted on: Sun, 02/04/2007 - 12:26am
LisaM's picture
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Joined: 11/04/2005 - 09:00

Thanks again for the advice. Sending hugs right back at you.
Question--what is the Nissen? Is it a treatment of some sort? It is odd that a treatment for ee would make your son's condition worse ?!
I'll just keep my appointment (in May) and discuss it with the new GI doc. I hope the doctor is in to *discussing* options with the patient (as opposed to pronouncing opinions without going into the reasons).
I'll prepare a one page summary of my symptoms + questions before my appointment. The key for me is to know whether in adults this needs to be treated preemptively to prevent structural damage and to prevent the eosinophils from penetrating further (i.e. other organs.) From what you're saying, though, they only treat the symptoms. If that's the case, then i'm not sure I'll need to know. I'm not thrilled about the possibility of taking steroids. (I'm okay with dry meat as long as I have water by my side. And while pills that are not gel caps stick, I don't need to take any.)
About the celiac issue---I'm sure I have it, and I'm not wanting to have a biopsy done because those biopsies are useless unless the patient is eating gluten (or unless the patient has refractory sprue). Once you're off gluten, celiac disease is hard to diagnose. Doctors put their patients back on gluten for testing purposes, but there are no studies on how much is enough. And gluten rations are measured in terms of wheat---I can't eat wheat (allergic), and no one knows how much gluten is in barley by comparison (barley has a "low gluten content). So even if I were to a negative biopsy, I would trust the positive blood tests. In any case, I'm not willing to go through another gluten challenge--I went through this this summer, and I don't want to make myself sick again.
My doctor *suspected* celiac after I tested positive for anti-tTG . . . but he became more convinced when we repeated the blood tests after gluten challenge and the anti-tTG levels had shot up. Plus the antigliadin test was positive.
About your son's reaction---do you know if they gave him diazemuls the first time? Diazemuls contains soy and egg derived ingredients---my GI doc wasn't aware of it. I found out by asking about what meds I'd be given and by doing my own research. I also asked my respirologist's resident doctor---off the top of her head, she said that diazemuls is contraindicted for the peanut or egg allergic. I'm not sure if she meant *soy* rather than peanut . . .but she said peanut. (She didn't look it up, so there's a possibility she might be mistaken. Sometimes, though medicines are contraindicted for the peanut allergic because they contain legumes.)
This might be something to look into before your son's next endoscopy as I see that all of your children are allergic to egg and that soy might be a concern too. A lot of doctors don't think of drugs as having food-derived ingredients. Unfortunately, I'm allergic to corn so everything is suspect in my case. (But I think I'd be fine with some corn-derived ingredients. My corn allergy isn't nearly as severe as the egg, nut, soy allergies.)
[This message has been edited by LisaM (edited February 04, 2007).]

Posted on: Sun, 02/04/2007 - 2:24am
chanda4's picture
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Joined: 12/14/2006 - 09:00

Thanks Lisa for all of that. I really don't know about the Celiac much, you seem to know a ton and are on top of things. Just need the docs to work with you more!
As for the Nissen, he had a hiatal hernia which means the opening from the esophogus into the stomach was very large, thus food could come right back up back into his throat and mouth, causing bad reflux. The meds helped the pain, but didn't stop the food from coming back up. so they do this procedure called a Nissen Fundoplasty. I was scared to death for him to do it, but I also didn't want him hurting the rest of his life from reflux. So they go in laperoscoply(sp??), they made 5 little slits around his belly. They went in and wrapped part of the stomach around the opening to create a tight opening, food can go in but not back out. For a long time he coulnd't even burp...they say he may never be able to puke either. Sometimes they can get them too tight though and food gets stuck, so when he first said it was hurting to swallow, they gave steroids to take down the swelling. That did the trick.
Now that I think about all this, I don't know if he had EE prior to the precedure or if it came up after. Something to ask next time were in. But they have him swallow the Flovent now. My ashtma kids inhale the same Flovent when they have colds or increased allergies causing their asthma to flair.
I am unclear if they can do anything to cure it, or if they just treat the symptoms. If I ever get in with that specialist, I will for sure ask. This just all came on last fall, so as much as I try to read about it, I don't understand it either. I did search after search online and read everything. It seems even the doc's don't really understand the cause or the treatment just yet.
Do you have seasonal, environmental allergies as well?? I ask because they said it could be flaired up by those as well, just breathing allergens, they think. So far Carson hasn't shown anything(no seasonal yet) but a level 5(89) for dog...and my hubby won't get rid of ours. So for all I know the dog could be causing the flair-ups..breathing in the dander or whatever. He doesn't have many allergy symptoms around our dog, other dogs he does...but my hubby doesn't think the dog is the problem.
Anyways, you are dealing with alot of food allergies, and tough ones. Carson's aren't too bad to control(just tough enough), I couldn't imagine if I had to add wheat(or corn!!) to the mix. He seems to not have many choices as it is. Soy is a tough one for me actually. I hope I am keeping it all out of his diet, it's hard(it's hidden in so much).
I don't think this is common at all, you are the second I've come across with it. Possibly having EE. I hope you don't, but then it would answer alot of questions wouldn't it. I have a friend in Chicago, her son has it too(he's 8) but his is more like yours, difficulty swallowing, pills/food getting stuck etc... my guy just has pain, all the time, pain. HUGS...hope I didn't ramble too much [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)
[This message has been edited by chanda4 (edited February 04, 2007).]

Posted on: Sun, 02/04/2007 - 1:58pm
LisaM's picture
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Joined: 11/04/2005 - 09:00

Oh, I understand about the "Nissen" then--sounds scary but also very necessary.
Yeah, soy can be a hard one to avoid. I see you have soy *and* dairy allergies in your family. My mom had to deal with that too when we were growing up--it was very stressful for her (she was concerned about cross contamination and about giving the wrong kid the wrong milk by accident). I drink milk but am anaphylactic to soy, one of my sisters used to be able to have soy but preferred goat's milk, the other sister was severely allergic to both milk and goat's milk but could have soy.
I don't need to worry so much about reading labels now because I make everything from scratch.
Environmental allergies--yep. Grass, ragweed, various tree pollens, some moulds, dust mites, dogs, horses. I tested allergic to cats (more so than to dogs, curiously enough), but I don't think I react (I definitely react to dogs). Recently, I was diagnosed with a latex allergy. (reactions have been very mild, but my RAST was high.)
It can be a difficult situation if the family pet might be trouble--I have an aunt who is on *a lot* of asthma meds . . . she is very allergic to her dogs. Her husband doesn't seem to agree . . . I think he just loves those dogs so much he has a mental block about the issue.
You have probably thought of this already, but if you can't get rid of the dog, perhaps you could keep it out of your child's bedroom or better yet, away from the entire floor where he sleeps. The dander will still get on his clothes, but this might help somewhat, and if he improves you would know that the dog is a problem. A Hepa air filter in your son's bedroom might help too.
I'd definitely be interested in hearing about what the specialist has to say. I'll email you so you'll have my address.
I'm sorry to hear that your son is in pain--that would be so tough to see him suffer and not be able to do anything.

Posted on: Mon, 02/05/2007 - 12:21am
chanda4's picture
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Joined: 12/14/2006 - 09:00

Thanks Lisa!! I did get your email....I was hoping, for both of us, someone could offer more info about EE on here, but it looks like were it!!!
I do need a heppa filter, the dog is only allowed on the mail level, bedrooms are all upstairs....I at least got hubby to agree to that. The darn dog used to even sleep on our bed! Now he has a rug next to the couch! The dog is 9, so hubby thinks he'll die soon enough...but I don't agree, heck he could live another 9 years for all I know! He's a big dog too, black lab mix. "sigh"!!!
The milk issue is scary, I've recently thought about possible dangers. My 3yr old tells me his milk(rice) is white...yikes, so is cow's milk!! I add a little strwbry syrup to his, so hopefully he'll recognize it as being pink too(well, except in cereal). But I think he is still getting soy, that darn soy lechtin(sp???) it's in everything! His soy was very low, so I thought I got out a majority of the allergen but that soy lechtin is still in alot of stuff. I'm trying! His prok was pretty high(level 3) so I thoguht things would get better once I took all that out(ham sandwiches, sausage with spaghetti, pepperoni on sandwiches etc....) but it's gotten a little better, he still complains though.
But I will keep your email and let you know anything that comes our way. I may call for a follow up here soon. We're in Denver and he just goes down to the Children's Hospital...I may even call this week!! I'll keep in touch [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Chanda
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)

Posted on: Fri, 02/09/2007 - 1:27am
monkey's picture
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Joined: 06/30/2005 - 09:00

I have 2 PA boys, my 4 year old has confirmed EE. he is on daily doses of zantac, zirtec, and singulair. there are other symptoms besides reflux to look for. the esophagus is like a muscle that helps push the food down into the stomach. with EE, it doesn't function well, and the food gets stuck on the way down, sometimes even impacted. the result, reaching for a liquid diet, gagging and vomiting when trying to eat, and though i hate to use these words here but, its just like when you eat a bunch of peanut butter on bread and feel the sensation of it being caught in your throat and reaching for something, anything to drink, to wash it down.
the endoscopic biopsy is a breeze, we did it on my son, i think before he turned 3. the only scarey thing, as usual, is using general anesthesia before other options have been ruled out.

Posted on: Fri, 02/09/2007 - 1:40am
chanda4's picture
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Joined: 12/14/2006 - 09:00

There are different variations of EE, my son is more pain, he is always in pain. I've rarely seen him choke on food, I think it usually goes down but hurts the whole way. The specialist that came to Denver is Glenn Futura, he's from Boston(I think that is spelled correctly)...we are awaiting an appt with him in March(he is working with the Allergist and GI docs at Children's) I am really hopeful!!! Goo dluck too, our boys are about the same age!!
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)

Posted on: Mon, 02/19/2007 - 5:48am
chanda4's picture
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Joined: 12/14/2006 - 09:00

Lisa and Monkey...I was thinking about this again. My son has been saying his tummy hurts again. Do either of you experience pain when *not* eating, or is your pain usually just when you are trying to swallow?? I know Lisa and then your boy Monkey seem to be bothered by the swallowing part of the EE....do you get pain in the esophogus through-out the day or even at bedtime, when NOT eating? If you're just sitting there does it hurt?? And where does it hurt?? I know, hard to tell on a message board...but is it up in your neck by your throat, down in your throat by the collar bones, down further by the sternum(sp?).....thanks for any info, I wish I could get a handle on this stuff. HUGS [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)

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