Dr. Thinks It Might Be Eosinophillic Esophagitis, Not Celiac

[pixiegirl]

You get diagnosed with biopsies done by endoscopy and colonoscopy.

At first I could eat very little but it seemed as I healed my gut up I was able to tolerate more. I can only have tomatoes in small amounts, no peanuts, no squash and of course no gluten. Things like fresh fruits and veggies I can only have in small amounts but when they are cooked I have almost no problem with them at all.

I'm doing quite well and for the first time in 14 year feel really good.

Susan

[TCA]

I was just reading some posts from your thread about Megan's gagging not getting any better. I didn't realize this was you and was just getting ready to ask if you've looked into EE or EG. Guess I have my answer.

I didn't read a lot of the posts, but I did see something about her not walking at 18 months...is that right? Maybe there are other issues that I'm unaware of since I didnt' read everything, but I wanted to let you know that my son walked at 17 1/2 months. I was worried starting at about 14 months as he just didn't seem to have good muscle tone or something. The doctor wouldn't even discuss my concerns unless he still wasn't walking at 18 months....we got awfully close. I've wondered if this has anything to do with all his other issues or if he was just a late walker. How is Megan doing and are the doctors concerned at this point or do you know anything else?

You are so sweet to be worried about my little one while going through so much yourself. Megan still isn't walking at 18 mos, but she also has had 2 open heart surgeries, a fundoplication that came undone, and all the feeding and GI issues we've talked about. She's doing sooo much better since her last heart surgery. Things are improving every day and I thank God for that. With all she's been through I'm not too worried about her not walking yet. It will come. If you want to keep up with her, I post updates on her thread every week or two. Go to the end. It's too long to try to read it all. I just updated yesterday. My son didn't have the issues she does and he didn't walk until 16 mos., but I would bet that it was because of celiac disease. I just didn't know it at the time. How is your little man today?

[azmom3]

You are so sweet to be worried about my little one while going through so much yourself. Megan still isn't walking at 18 mos, but she also has had 2 open heart surgeries, a fundoplication that came undone, and all the feeding and GI issues we've talked about. She's doing sooo much better since her last heart surgery. Things are improving every day and I thank God for that. With all she's been through I'm not too worried about her not walking yet. It will come. If you want to keep up with her, I post updates on her thread every week or two. Go to the end. It's too long to try to read it all. I just updated yesterday. My son didn't have the issues she does and he didn't walk until 16 mos., but I would bet that it was because of celiac disease. I just didn't know it at the time. How is your little man today?

I must say I was a little intimidated by her thread...so long , I figured it'd be better to get an update from you all in one shot rather than try to read it all. Wow, she's been through so much, and I feel for you and your family as the stress of it all can be overwhelming at times (most of the time, it seems). I'm glad to hear things are getting better. Our "little guy" (as we call him), is doing good today. We've been tracking his calories and he does seem to be eating better since we took out all his allergens (that we know of so far), from his diet. He's averaging about 800 calories a day right now(dr. said he should be between 1100-1200, so we're not quite there yet, but making progress). I'm resisting the urge to weigh him constantly, but will be doing it weekly just to make sure he's not losing. He absolutely refuses the formulas and soy milk that we've been trying, so we're trying to find something that is somewhat healthy, but that he loves to give him after each snack and meal to try to get the extra calories that way. Next dr. appt. is Monday with the allergist for more skin tests, then to the lab sometime after that for more bloodwork. It's neverending!

[happygirl]

A great article I just found, written by a Cincinnati doc

Open Original Shared Link

[azmom3]

A great article I just found, written by a Cincinnati doc

Open Original Shared Link

Thanks for finding this for all of us, Laura!

How are you doing, by the way? I wrote a response to your post about your rough time at the doctor, but didn't see it when I went back to that thread later....maybe I PM'd you instead? Did you see it or is it lost somewhere? (This is why my husband paces back and forth when I'm on the computer.)

[Helena]

Thanks for the article--it is very informative and comprehensive. My respirologist actually wanted me to be investigated for ee . . . that's why she sent me to the GI doc in the first place. . . but we got sidetracked by the whole celiac disease issue.

[happygirl]

x

[azmom3]

Here's an update on Hunter:

We went back to the allergist for more skin testing (and to determine what else we need to add to the bloodwork). He retested everything on the basic panel as well as some additional ones we wanted to look at.

He was allergic to all the same things, but the numbers all went up from just 5 months ago. Milk didn't even show up on the skin test the first time (but was 10+ on blood), but showed up as 11 on the skin test this time. It showed him being allergic to eggs, milk, and peanuts (which we removed from his diet 2 weeks ago). He also is allergic to oranges, corn and rice. It also showed a small reaction to oats and tomatoes. As far as environmental stuff, he's allergic to feather, cat, dog, aspergillus, alternaria, (are one or both of these molds?) and grass.

According to the skin tests (but we're not believing this alone), he is not allergic to chocolate, strawberries, soy, wheat, dustmites, and bipolaris (not quite sure what this is??).

We are doing bloodwork tomorrow (hopefully), to check rice, corn, orange, egg, milk, and peanut again. We're also redoing the celiac panel again, and if they are able to get enough blood, we will checking for the CF gene; otherwise, we will do this one at a later time when either he has to have blood drawn again or when he' under for the scopes.

The allergist said that eosinohilic disorders are on the rise; he's seeing between 2-3 patients a week with it right now and he suspects this with Hunter (as did the GI doctor), but even moreso after today's visit. He said to check with the GI doctor but he thinks they will be doing biopsies of all areas where you can have eosinophilic disorders, not just the esophagus (which was new to me, so I need to check into this more).

I asked about just going to a very basic diet and starting over, adding things in gradually. He thinks it would be better to wait the month and find out for sure what's wrong, rather than possibly masking it and having more problems later on from not finding it soon enough, but says this is probably what we'll have to do....just in time for the holidays, too.

It's stressful, but I keep thinking that as long as I get answers so we can work towards a solution, that everything will be ok.

[happygirl]

It's stressful, but I keep thinking that as long as I get answers so we can work towards a solution, that everything will be ok.

Yes, Eos can be in the esophagus, the stomach, the small intestine, and/or the colon.

Here are some more of the sites I have found (beyond the apfed, the journal article, and kidswithfoodallergies:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

these two are some of my favorites:

Open Original Shared Link

Open Original Shared Link

[Simply-V]

He was allergic to all the same things, but the numbers all went up from just 5 months ago. Milk didn't even show up on the skin test the first time (but was 10+ on blood), but showed up as 11 on the skin test this time. It showed him being allergic to eggs, milk, and peanuts (which we removed from his diet 2 weeks ago). He also is allergic to oranges, corn and rice. It also showed a small reaction to oats and tomatoes. As far as environmental stuff, he's allergic to feather, cat, dog, aspergillus, alternaria, (are one or both of these molds?) and grass.

According to the skin tests (but we're not believing this alone), he is not allergic to chocolate, strawberries, soy, wheat, dustmites, and bipolaris (not quite sure what this is??).

Glad to hear you got some results. Corn, oats, and rice are all grass seeds. Corn rarely shows up, so pay attention to that one even if the blood test shows negative. Corn can cause a lot of the same symptoms as gluten-intolerance, just somethign to tuck in your mind incase his test results for gluten are negative and he doesn't have the gluten-gene. Btw corn also has like 36 molds in it naturally.

Feather - is the egg allergy. Usually if you have one, you have the other.

Apergillus and Alternaria are both common molds. They break down plant material into compost. So you'll want to watch mowing the lawn around him, raking leaves, etc as this will put the mold in the air (not to mention his grass allergy). Hay rides will also have a lot of these molds. Dust may also have these molds present, so he may not react to dust mites it might be the mold in the dust he's reacting to.

He may not be allergic to chocolate itself, as chocolate has a lot of corn and soy in it. Strawberries have a lot of histamines in them (plus they're sprayed with corn and syrups are often corn based) so he could be reacting to the histamine in the berry.. not the berry itself. A lot of wheat products also have corn, rice or oats. And I don't know what bipolaris is either.

and soy.. soy is a close relative of peanut. If he has a peanut allergy he could cross-react to soy.

[TCA]

Just wanted to add in that I have terrible mold allergies and can't tolerate a lot of cheeses because of it. I know he's not on dairy now, but something to think on as you trial foods. Hope he's doing better soon! I think of you often.

[azmom3]

Just wanted to add in that I have terrible mold allergies and can't tolerate a lot of cheeses because of it. I know he's not on dairy now, but something to think on as you trial foods. Hope he's doing better soon! I think of you often.

All these links...mold & cheeses, feather & egg, etc....they make sense when they're mentioned, just never made the connection myself. I feel like I need to look at allergy testing the opposite way and test for the foods that I think he can tolerate instead of the ones he can't. At least if I have a starting point of what we think are ok foods based on skin testing and then watch for any reaction to those. I think he's allergic to far more foods than he isn't allergic to...at least it seems that way.

Simply V:

I'm just curious..what's your background as far as allergy stuff? Is this all first hand experience or some schooling in the area? I am learning so much from all the info you've given me so far, but still feel likes it's just the tip of the iceberg. Thanks for all your help!

[Simply-V]

Simply V:

I'm just curious..what's your background as far as allergy stuff? Is this all first hand experience or some schooling in the area? I am learning so much from all the info you've given me so far, but still feel likes it's just the tip of the iceberg. Thanks for all your help!

My background.. I have been suffering with allergies ever since I can remember (aprox age 3-4 if not before) and at age 4 I started on antihistamines. I had been on daily antihistamines since (plus any other allery med you can think of) up until my corn allergy discovery 2 yrs ago, and then it took til last december to realize the meds were doing more harm than good. And I am completely med-free and breathing fine. Its amazing.

I've been researching and learning about allergies my entire life. I have been poked and prodded and studied myself. I have studied allergy solutions, anything to get my nose not to run, my eyes not to water, and my stomach not to go on revolt (which took me nearly 30 yrs to link that with food allergies). I have done all the "allergy friendly" house adjustments and precautions, and nothing seemed to help until I uncovered the food problem.

Up until I invesitated foods, I was diagnosed as allergic to: alternaria, helminthospirium, most grasses, most trees, dogs, cats, dustmites, roaches, fungus, pigweed, ragweed. I even went and took shots to get rid of these, but I couldnt make progress as I kept reacting to the shot.

I have worked in pharmacies, and grew up with medical terminology being discussed during dinners (family of medical professionals). So I have a fairly good understanding of how the system works.

Since my food allergy discovery (on my own btw, no doctor was helpful in that) I have spent most of my time doing research and gathering information. I am constantly reading and researching autoimmune disorders and allergies, hoping I guess to find a cure (which there is none btw). In my researching process, I kept running into others with similar problems, similar symptoms, and I am constantly comparing notes with others in the same boat as a lot of us. So a lot of what I know, is not only from my own experiences but from others experiences as well.

(btw Cheese and mold allergies aren't an unheard of link, and definately something to watch out for.)

[azmom3]

My background.. I have been suffering with allergies ever since I can remember (aprox age 3-4 if not before) and at age 4 I started on antihistamines. I had been on daily antihistamines since (plus any other allery med you can think of) up until my corn allergy discovery 2 yrs ago, and then it took til last december to realize the meds were doing more harm than good. And I am completely med-free and breathing fine. Its amazing.

I've been researching and learning about allergies my entire life. I have been poked and prodded and studied myself. I have studied allergy solutions, anything to get my nose not to run, my eyes not to water, and my stomach not to go on revolt (which took me nearly 30 yrs to link that with food allergies). I have done all the "allergy friendly" house adjustments and precautions, and nothing seemed to help until I uncovered the food problem.

Up until I invesitated foods, I was diagnosed as allergic to: alternaria, helminthospirium, most grasses, most trees, dogs, cats, dustmites, roaches, fungus, pigweed, ragweed. I even went and took shots to get rid of these, but I couldnt make progress as I kept reacting to the shot.

I have worked in pharmacies, and grew up with medical terminology being discussed during dinners (family of medical professionals). So I have a fairly good understanding of how the system works.

Since my food allergy discovery (on my own btw, no doctor was helpful in that) I have spent most of my time doing research and gathering information. I am constantly reading and researching autoimmune disorders and allergies, hoping I guess to find a cure (which there is none btw). In my researching process, I kept running into others with similar problems, similar symptoms, and I am constantly comparing notes with others in the same boat as a lot of us. So a lot of what I know, is not only from my own experiences but from others experiences as well.

(btw Cheese and mold allergies aren't an unheard of link, and definately something to watch out for.)

Thanks for the response. Sorry you had so many rough years, but glad you were able to figure out the corn thing. Now I've gotta go read your response on my other thread.

[happygirl]

I, for one, am eternally grateful to you, V.

And to azmom for opening the door to eosinophilic.

[Simply-V]

I, for one, am eternally grateful to you, V.

Glad I could help. Somedays I never know if I'm helping or just getting labeled "That crazy corn lady".. Somedays I wonder myself.

[azmom3]

I, for one, am eternally grateful to you, V.

And to azmom for opening the door to eosinophilic...being tested in 2 weeks.

Hi Laura,

I'm so glad you're being tested and I can't wait to hear the results! We had to wait 4 1/2 months just to see our GI dr. for our initial appt. and the soonest they can do the endoscopy is end of November! Hopefully, we will both get answers though and if not, it's one more thing we can cross off the list, right? (trying to find something positive in it.....)

Glad I could help. Somedays I never know if I'm helping or just getting labeled "That crazy corn lady".. Somedays I wonder myself.

Can I call you that?

Crazy corn lady,

If there was an emoticon that bowed or gave a standing ovation, you would get it, but the best ones I see are smiling faces.

[Helena]

SimplyV, As an allergy sufferer (including to corn), I appreciate your posts. Have you found anything to help the seasonal allergies? Or was it eliminating corn that did the trick? I've had the same sort of experience with shots and with all the meds in my allergist's arsenal---haven't tried regular immunotherapy yet, but my allergist had me try the preseasonal allergy vaccination shots this past season. Never again. So saith my allergist. He says I can try regular shots one day which are less potent. . . but with caution.

And Laura, thanks for posting those links to info. about eosinophilic disorders--I really do think that I have ee, and I've learned a lot from the resources you have drawn our attention to. My GI specialist was supposed to look into it way back in June (the referring doctor mentioned it in the referral), but we got sidetracked (the issue of celiac disease came up). I wasn't sure that I really wanted to pursue it . . .as my symptoms are on the mild side (including difficulty swallowing some things, reflux which I can mostly control through diet) and I don't like the idea of going back on corticosteroids or, worse, steroids like prednisone. But now I do want to be sure to raise it at my next appointment.

Good luck with the appointment in a few weeks . . . on the one hand, I'd hate to hear that you have eosinophilic gastritis, but on the other, it would be a relief I'm sure to know what's causing your illness.

[Simply-V]

SimplyV, As an allergy sufferer (including to corn), I appreciate your posts. Have you found anything to help the seasonal allergies? Or was it eliminating corn that did the trick? I've had the same sort of experience with shots and with all the meds in my allergist's arsenal---haven't tried regular immunotherapy yet, but my allergist had me try the preseasonal allergy vaccination shots this past season. Never again. So saith my allergist. He says I can try regular shots one day which are less potent. . . but with caution.

Helena, I wish I had answers for you. For me, it was getting rid of all my food allergens (slight allergies included). Honestly I wouldn't have been able to do it without Immunolabs IgG and IgE testing. Most of my allergy issues were corn related. As long as I keep off of corn, my airborne allergies are pretty non-existant. If I start to have allergy issues, its usually because I tried something new or a new brand of something and it has something I'm allergic to in it. I wish corn wasn't everywhere as it would make this avoidance much easier.

Difficulty swallowing things is often a symptom that you're trying to eat something you're allergic to or that you just ate something you're allergic to (reflux can also be caused by food allergy/intolerance).

Honestly, from what I've read on Eosinophilic Disorder.. I put it in the same helpful category as IBS and Fibromyalgia. But maybe I haven't read enough.

[Helena]

Hmmm...well eliminating all allergens does make sense! I was hoping that you found some remedy for seasonal allergies or something. I mostly eliminate my allergies . . . doing so means cooking everything from scratch. But I do get some corn in milk (corn oil for vitamin A and D preparation) and in my vitamins (does not contain corn starch . . . the corn is probably a component of one of the vitamins). I sort of need these foods for vitamin D . . . and my dietician thinks I ought to be taking a good multivitamin.

I haven't heard of those immunolab tests--I should look into it one of these days.

Re: the swallowing problems--in my case I'm certain they are structural. I have difficulty with dry meat . . . also taking Tylenol (back in the days when the pills were white and round rather than the easy swallow tablets) was painful. The ENT doc I saw years ago noted that my larynx is inflamed . . . I'm wondering if that could be related to ee. Also, based on my breathing tests my respirologist thinks I have vocal chord dysfunction (vocal chords block the intake of air----in my case very slightly.) Again, I don't know if that would be related to ee, but it might be. In any case, I do have some upper respiratory issues.

[Simply-V]

Hmmm...well eliminating all allergens does make sense! I was hoping that you found some remedy for seasonal allergies or something. I mostly eliminate my allergies . . . doing so means cooking everything from scratch. But I do get some corn in milk (corn oil for vitamin A and D preparation) and in my vitamins (does not contain corn starch . . . the corn is probably a component of one of the vitamins). I sort of need these foods for vitamin D . . . and my dietician thinks I ought to be taking a good multivitamin.

I haven't heard of those immunolab tests--I should look into it one of these days.

If you can find Organic Valley milks, all are corn-free except those produced at the “55 1224” plant. This includes their fortifications. Also at Costco, Kirkland Signature Organic Milk is supposed to be corn-free as well including vitamins (though one person did react to it). (I don't do milk so I have to rely on others for this info)

Vitamins... Check Phytopharmica. www.phytopharmica.com Not all theirs are corn-free, but if they say its corn-free it really and truely is. They also make a good calcium pill with vitamin D in it.

I'm not saying that your throat isn't swollen or inflamed. But often that inflamation can be caused by food allergies. From what I read of EE, there is no known cause. But steriods (a common thing prescribed for anaphylactic shock and to aid in recovering from allergic reactions) and avoiding food allergens is about the only "cure". But then maybe I haven't read enough on it. Just seems to me to be a fancy medical term for "We see the symptoms, we don't know what it is, but these remedies sure seem to help." *shrugs* but thats just my take on what I've read.

[Helena]

I'll take note of those brands of milk you mentioned---if I ever move to the States (which is a distinct possibility) I can go corn-free. I'm in Canada--I did write to Harmony Organics because I could hardly believe that an organic milk producer would use corn oil (because of the GMO issue) . . . but even Harmony uses corn oil (although they are trying to switch to something else---sunflower oil, which in my view is a bad idea unless they declare it on the label because a lot of people are severely allergic to sunflower.)

I'll take a look at those vitamins more carefully . . . but the other big vitamin issue for me (aside from wheat) is soy, and I noticed that their multis do contain soy (natural source of vitamin E-some soy allergic people do react and some don't). The vitamins I currently take do have soy-derived vitamin E----but my allergist had me try them in his office before trying them at home to make sure that I didn't have a severe reaction.

About the ee---I agree. It is probably an allergic disease which is of yet poorly understood (although I do wonder if other types of immune reactions--like celiac disease could also cause it). I believe environmental allergies can be a factor . . .I wouldn't be surprised if food allergies are too.

I have one more corn allergy question---I noticed that you mentioned that berries are often sprayed with corn-derived formulas. Are organic berries safe for you? Or are those sprayed with corn as well. What about wild blueberries? I do notice that I sometimes react slightly to some types of frozen berries (and uncooked fresh berries . . but especially to the frozen ones).

[Simply-V]

I have one more corn allergy question---I noticed that you mentioned that berries are often sprayed with corn-derived formulas. Are organic berries safe for you? Or are those sprayed with corn as well. What about wild blueberries? I do notice that I sometimes react slightly to some types of frozen berries (and uncooked fresh berries . . but especially to the frozen ones).

I didn't realize you were in Canada. So yeah, as far as Milk goes you're screwed, because as I understand it in Canada milk has to be fortified or its illegal. And the fortifications are soy or corn based. There are a couple Canadians on Delphi - Avoiding Corn forum and they may be able to give you more Canadian based survival tips.

I've actually had a better time with frozen berries, but I do buy organic ones. Citric acid is often sprayed on the berries to help them retain their color. It isn't usually labeled because its usually added to what they use to "clean" the berries, and processing aids aren't required to be added in most cases. Organic ones seem to not use these processing aids.

Fresh ones really set me off as I have not found a fresh strawberry that isn't rinsed with citric acid. Frozen organic ones I'm fine with.

I can't say on the blueberries as I'm allergic, but I'm assuming their in the same boat as strawberries and grapes. I can't eat fresh store bought grapes either, plain grape juice is fine. Concord grapes from farmers markets seem to be ok as well.

[Helena]

Thanks so much for all the info.! Who would have guessed there would be corn on berries. I really should check out the delphi forum . . .

[happygirl]

by the way, we are having a convo on EGIDs in another thread...wanted to make sure you wonderful ladies saw it. I posted a ton of links.

Open Original Shared Link

V: You KNOW that I value your allergy food opinions to a great extent. you have personally helped me a lot. but, egids are much more complicated than "just" (and noticed I put it in quotes! ha!) allergies. I recommend reading one of the journal articles that I posted on the above thread, by dr. rothenberg. They think that allergies-intolerances are a small part of it. Yes, they are most certainly learning about it....but it is much more "distinct" and serious than ibs, fibro, etc. you have always been honest with me, and i have opened my mind and learned so much.

Helena: for those that do go on steriods (and not all do!) they have "better" steriods. I don't think prednisone is the top choice...budenisone (Entocort) seems to be one of the better ones. Plus, it really depends on "where" the eosinophilic reactions are occurring (esophagus vs. colon, for example) as to how to treat it.