Dr. Thinks It Might Be Eosinophillic Esophagitis, Not Celiac

[happygirl]

this actually might fit me---i had no idea. i am reading up on it.

[azmom3]

this actually might fit me---i had no idea. i am reading up on it. it might explain all of my problems......

Looking at your bio, I'd definitely check into it. I read something about being allergic to most if not all foods having to do with this disorder. You can also have this in other places, such as your stomache, not just the esophagus. Have you found many different ways of eating the things you can or is it pretty much the same thing every day? That's where I'm afraid we're going with our son unfortunately, but who knows, maybe as we're experimenting with different medications and different eliminations from the diet, we will get our answers along the way and it won't be as bad as it seems right now. Good luck and keep us posted on what's going on with you.

Wow, you really have your hands full, it breaks your heart to see them uncomfortabe and the worst part is not having a quick fix like Motrin or something! Luckily we don't have that many issues but things are not getting better only worse, however to an outside person who meets my son he is perfectly normal noone notices anything, like yours he his a happy kid. Mine is just living with it doesn't really seem to faze him that much anymore, he will be talking to you and stop to take a hard swallow followed by a few more but then he moves on. My son also enjoys his sleep at 3 1/2 he even asks when its nap time or to go to bed early, he also complains that his legs hurt him alot usually once a day, not sure what that is about.

When people see my son, they usually comment on how small he is first, but other than that, they think he seems totally normal. What they don't realize is that I hold him A LOT. He's very irritable moreso than my other kids at this age, and wants to be held almost as much as a little baby. I'm not complaining. I'm enjoying the holding and cuddling for as long as I can especially since he's probably my last, but I wish I had the option sometimes and most importantly, I wish it wasn't because he's uncomfortable or in pain.

Could your son's leg pain be growing pains? I remember my older son going through unbearable pain in his calves, where he would be screaming non-stop and holding on to his legs. We had so many dr. visits because of this and bloodwork done, but never found anything and it eventually went away, only to resurface when he was maybe 7 or 8. It last a couple months both times. Hope he feels better soon.

[shai76]

The Rast Test is a blood test that only test for the 7 major allergens however the GI told us that they are very inacurate and thats why the elimination diet will have to come into effect but then when the RAST test came back negative the elimination diet was not mentioned nor was the fact that she had already told us that you can't rely on the RAST test alone, she only said just do the prevacide and call in 2 weeks to see if it is working, which I took as a blow off. Hopefully the Allergist on monday will set something up for a skin test which I am going to hate putting him thru but if we can get rid of his indegestion/heartburn it will be worth it in the long run! What symtoms does your child have? Mine the main issue is the chronic(even on prevacid)heartburn/indegestion, rash around the mouth, when he cries he vomits, his throat is always "itchey" and when he eats he hits himself on the side of his head, or rubs his ear or sticks his fingers in his ear due to the "itcheys". And rarley do we have a week with no cough!

There are actually 8 major food allergens: soy, milk, fish, shellfish, tree nuts, peanuts, eggs, wheat.

Secondly, the RAST can test for IGE antibodies for anything that you could possibly be allergic to, not just these 8. They can test from rag weed to coffee.

And they are fairly accurate, more so than the skin prick test. True the only sure test is a double blind challenge, but if you are allergic to anything you are tested for it will show up, at least as a weak elevation in IGE antibodies. Now the tests don't how that accurately how severe the allergy is. How your body reacts to elevated IGEs is sort of individual and relative to the allergic load.

BTW, it does sound like your son has major reflux issues,l which could account for all the symptoms you described there. I hope you are giving him the prevacid, as the GI suggested, and hopefully he improves. Does he have other symptoms of allergy, such as hives or ecema? Stomach pain and bloating?

[azmom3]

There are actually 8 major food allergens: soy, milk, fish, shellfish, tree nuts, peanuts, eggs, wheat.

Secondly, the RAST can test for IGE antibodies for anything that you could possibly be allergic to, not just these 8. They can test from rag weed to coffee.

And they are fairly accurate, more so than the skin prick test. True the only sure test is a double blind challenge, but if you are allergic to anything you are tested for it will show up, at least as a weak elevation in IGE antibodies. Now the tests don't how that accurately how severe the allergy is. How your body reacts to elevated IGEs is sort of individual and relative to the allergic load.

BTW, it does sound like your son has major reflux issues,l which could account for all the symptoms you described there. I hope you are giving him the prevacid, as the GI suggested, and hopefully he improves. Does he have other symptoms of allergy, such as hives or ecema? Stomach pain and bloating?

We are giving him the prevacid...not sure how long it takes to see improvement. It's been 5 days now and he woke up from nap today crying, burping and farting. I'm not even sure which other symptoms are related to this, so I'll just have to kind of watch and see. This lasted about 45 minutes, then he seemed normal again. Good news though, he's taking Miralax, as of five days ago,for his constipation and we just had 2 back to back days with poop....yay! I'm just wondering why they didn't give us this a long time ago as he's been suffering so long with constipation. Maybe it's not meant for babies or they have to be a certain weight? Hives was one of the first symptoms we noticed, starting when we first introduced solids. He would have hundreds of them at a time. he's been on zyrtec for a long time now and the hives are greatly reduced. There are some days he doesn't even get a single one. He's had excema, but nothing too out of control.

Just out of curiosity, does anyone know if cradle cap is in the "allergy, excema, asthma" family? I just started thinking about that, but he had awful cradle cap as a baby that was almost always raw, scratched, and bleeding. We tried every natural thing we could think of and then finally started using 1% cortisone cream on it. This is the only thing that would get rid of it and when we stopped, it would come right back. Or do you think it was something else making his head itch so bad? Our other 2 kids had cradle cap, but nothing even close to as bad as our "little guy."

[Helena]

I just read through this thread quickly so I've probably missed a few things . . . I've been to a *lot* (and I mean *a lot*) of allergy appointments, so I figured I'd put my two cents in.

but a few things that caught my eye:

1) when your son is complaining of things tasting "spicy" that sounds like an allergy to me. For most of the things I'm allergic to, the first warning sign is that my mouth and throat gets sore/tingly/itchy. Sometimes my ears get itchy also. Then sometimes the reaction progresses from there. (These days I don't go anywhere without my epinephrine.)

The scary thing about allergies is no one can predict how severe subsequent reactions will be on the basis of previous ones----if your son does not carry an epipen, you might want to discuss this with your doctor.

2) eosoniphilic esophagitis---I don't know a whole lot about this, but I've read a bit about it. In suggesting this, the doctor would not have been dismissing the concerns about reflux----people with this problem get reflux-like symptoms.

about the allergy tests-----they should not be interpreted without reference to clinical history. They can confirm an allergy, but they aren't 100% accurate. Some tests are more accurate than others depending on whether the protein is heat stable or not. (like the peanut one is more accurate; the ones for fruits and vegetables not as accurate).

So for instance, if you're fairly sure that your son reacts to a particular food, my allergist anyways 1) would do a scratch test 2) would do a RAST test

if both are negative, he has his patients bring the fresh food into the office . . . he does a skin prick test with the fresh food. If that is negative, he does an "oral challenge"---i.e. the patient tries small amounts of the food at intervals under medical supervision.

It *is* possible to have negative tests but to have an allergy. To make things more complicated, false positives are possible too for both the scratch and the blood tests! (for this reason, some allergists don't want to test unless the person is having symptoms. They don't want people to avoid foods unnecessarily.)

My allergist actually ended up putting me on an elimination diet---his instructions weren't very detailed, though, so I found it helpful to consult: Dealing with Food Allergies by Janice Vickerstaff Jonefa, PhD, RDN (she describes various elimination diets and provides recipe tips. Actually, the diet my allergist had me on was *more* restricted.)

It seems that you are getting lots of helpful advice here, but in case you're looking for some message boards dealing specifically with allergies:

www.allergicliving.com (a Canadian site) and www.peanutallergy.com

Good luck with all of this!

[azmom3]

I just read through this thread quickly so I've probably missed a few things . . .

but a few things that caught my eye:

1) when your son is complaining of things tasting "spicy" that sounds like an allergy to me. For most of the things I'm allergic to, the first warning sign is that my mouth and throat gets sore/tingly/itchy. Then sometimes the reaction progresses from there.

The scary thing about allergies is no one can predict how severe subsequent reactions will be on the basis of previous ones----your son probably carries an epipen but just in case he doesn't, you might want to discuss this with your doctor.

2) eosoniphilic esophagitis---I don't know a whole lot about this, but I've read a bit about it. In suggesting this, the doctor would not have been dismissing the concerns about reflux----people with this problem get reflux-like symptoms.

about the allergy tests-----they should not be interpreted without reference to clinical history. They can confirm an allergy, but they aren't 100% accurate. Some tests are more accurate than others depending on whether the protein is heat stable or not. (like the peanut one is more accurate; the ones for fruits and vegetables not as accurate).

So for instance, if you're fairly sure that your son reacts to a particular food, my allergist anyways 1) would do a scratch test 2) would do a RAST test

if both are negative, he has his patients bring the fresh food into the office . . . he does a skin prick test with the fresh food. If that is negative, he does an "oral challenge"---i.e. the patient tries small amounts of the food at intervals under medical supervision.

It *is* possible to have negative tests but to have an allergy.

My allergist actually ended up putting me on an elimination diet---his instructions weren't very detailed, though, so I found it helpful to consult: Dealing with Food Allergies by Janice Vickerstaff Jonefa, PhD, RDN (she describes various elimination diets and provides recipe tips. Actually, the diet my allergist had me on was *more* restricted.)

It seems that you are getting lots of helpful advice here, but in case you're looking for some message boards dealing specifically with allergies:

www.allergicliving.com (a Canadian site) and www.peanutallergy.com

Good luck with all of this!

We don't carry an epipen. OUr allergy dr. said that his test results, although high on everything, do not show anaphalactic levels. So are you saying that he could all of a sudden have this kind of reaction to something he's already been eating? I am very careful never to give him something new when we're away from home or getting ready to go somewhere.

Our allergist works the same way as yours...skin, RAST (is that the blood test?), and then oral challenge. Our son broke out in hives with almost every single food he's tried. The skin test was positive on everything and he did more specific tests (I think?) with the blood, also showing moderate to moderate-high positives on everything.

Thanks for the allergy message boards. I'll check those out.

[Helena]

You can't tell on the basis of the RAST (blood) test how severe the allergy is! If there is a high level, it means that there is a higher *probability* of a reaction. It *is* even possible to have a negative RAST test but to have a severe reaction. Seriously, the doctor should decide on the need for the epi on the basis of how severely your son reacts as well as other risk factors. (Those with asthma are considered to be at high risk of having a more severe reaction.)

Your child has a peanut allergy, right? I'm pretty sure that epipens are generally prescribed for peanut allergy in North America regardless of severity. Because, yes, the allergy can progress. Mine did. The epipen is literally a life saver.

In the UK I know they don't prescribe epipens as much. . . .other countries I'm not so sure about.

[happygirl]

azmom3,

the more I read, the more shocked I am. I've said all along that there has to be some mechanism behind why all of a sudden, I cannot eat ANYTHING. Ive read about how it can be your esophagus, your stomach, your small intestine, and your colon. If this is it, its hard to say which one it might be....but I would rank the stomach/intestine at the top. But, you never know. It is prety much the same thing every day, but I rotate. I won't eat the same protein source twice in a day because I'm afraid I'll "overload" on it.

My main concern at this point is if I would test negative if I have - in general - cut out the foods that set this off (i.e., i have been doing most of them since sept, but more recently learned about lemons, limes, tree nuts, etc). (Like with Celiac---if you take out the gluten, you won't test positive).

[pixiegirl]

Both my daughter and I have peanut allergies.. we both carry epi pens even though my allergy isn't in the "anaphalactic" area with blood tests its really hard to tell and most important (to me at least) is that peanut allergies often become worse with each exposure, so you don't really know if the next exposure will be the one you need the epi for. My daughters allergy is very bad, she reacts to airborne peanuts, so if someone is eating them near her she has a reaction.

My EG was diagnosed thru biopises when I had an endo and colonoscopy (at the same time). My GI wasn't even looking for EG (I am her first patient ever with it), just for some reason why I wasn't getting better. After the procedure she told me I had 7 small ulcers in my stomach and showed me the pix, they weren't bad, just sort of raw spots but she said they did biopsies of them. It was a couple of days later that we got the report that all those areas were filled with eosinophilic cells and so were all the biopsies done in my colon. So there was my answer.

Often the first line of defense (at least for adults) is going on steroids to allow your gut to heal. Both my GI doctor and allergist felt that (prednisone) was just too "big gun" to start with and my allergist started me on Gastrocrom a Rx with very few side effects. I too went on a rotation diet for a good 4 weeks and between that and the Gastrocrom I really got better quickly. I still take the Gastrocrom today prior to each meal and for the most part I feel really good.

There are a lot of different ways to treat EG (or EE or which ever you have) and I think from the various things I've read that being open to trying things is a must, it seems like different things work for different people.

Susan

[Helena]

azmom3,

My main concern at this point is if I would test negative if I have - in general - cut out the foods that set this off (i.e., i have been doing most of them since sept, but more recently learned about lemons, limes, tree nuts, etc). (Like with Celiac---if you take out the gluten, you won't test positive).

No, that isn't generally true with allergies. Once allergic, people tend to test positive on the tests regardless of whether they have avoided the food or not. Sometimes peoples' RAST levels do drop when they are still allergic . . . so maybe it happens, but most people will always have allergen-specific antibodies circulating in their blood stream.

The difference between allergies and celiac (as I understand it) is that with allergies, the immune system attacks a particular type of protein (peanut, wheat, whatever) causing the body to release inflammatory chemicals, etc. Unfortunately in eliminating the protein sometimes the body ends up self-destructing. Even when the allergen is not present in the body, the immune system is always on the "look out" for it . . . so the antibodies are there ready and waiting. (Kind of like how if you've had chicken pox, the antibodies which recognize the virus and are primed to destroy it are always in the system.)

But with celiac (and I haven't read as much about celiac so I might be getting this wrong) the immune system attacks the body when gluten is present. (So the immune system doesn't actually set out to destroy gluten . . .gluten just sets off the reaction?) The blood tests register whether the immune system is reacting . . . if it is not reacting, then the autoantigens associated with celiac are not present.

LauraJ, what you're going through kind of sounds like my sister. She thinks she has "leaky gut" . . .and gluten just happens to be one of the many things that she is intolerant to, but I really think she has celiac and that is what is causing "leaky gut" syndrome. (My mission is to get her to *stop drinking rice dream* (her one source of gluten)--I think she'd feel a lot better.) She does have lots of allergies . . . but it is hard in some cases to separate the allergies from the intolerances. My sense is that she has developed more allergies . . . but I'm not sure what her symptoms are with various foods. Like you she can't even have canola oil---she can have safflower or olive. No dairy, gluten, soy, lentils, legumes, nuts, eggs, fish, potatoes . . . the list goes on! Raw fruits and vegetables bother her throat too--this is common with people with severe pollen allergies (it is called "oral allergy syndrome") I know that she tested positive to some things on allergy tests and tested negative to other things . . . she does have to carry an epipen for some of her allergies.

[azmom3]

If he is really missing peanut butter, there are alternatives out there for his old favorites. You can buy soynut butter, if soy is one he can tolerate. Also, our school serves sunbutter sandwiches, but I don't know where you can find the butter made from sunflower seeds instead of peanuts.

ETA: You can buy it on Amazon, so I'm sure it is available at a lot of places that sell allergy alternatives. Sunbutter is the consistency of peanut butter, with no peanuts or tree nuts. HTH!

I was actually getting excited to try sunbutter, but looked at his list of things he's allergic to again and sunflower is on there as moderate-high positive. Hazelnut, pistachio, and sunflower are all on a separate sheet by a different lab than the other nuts, so maybe this was done in addition to the peanut/tree nut panel. I always thought it was just a part of that panel until I looked at it today. We're being tested for soy tomorrow, so hopefully he's not allergic to that. Tahnks for your suggestions, though.

[jerseyangel]

I was actually getting excited to try sunbutter, but looked at his list of things he's allergic to again and sunflower is on there as moderate-high positive. Hazelnut, pistachio, and sunflower are all on a separate sheet by a different lab than the other nuts, so maybe this was done in addition to the peanut/tree nut panel. I always thought it was just a part of that panel until I looked at it today. We're being tested for soy tomorrow, so hopefully he's not allergic to that. Tahnks for your suggestions, though.

Can he eat peas? Peabutter is made from roasted peas, and is pretty good.

Open Original Shared Link

[azmom3]

Can he eat peas? Peabutter is made from roasted peas, and is pretty good.

Open Original Shared Link

I never knew there was such a thing. He won't eat regular peas, flat out refuses them, but never had a reaction that I can remember from eating them when he was a baby. He had hives every day though until recently, so who knows. I'd be willing to try it though. Can you buy it at Whole Foods? Thanks for the suggestion!

[mbg98]

There are actually 8 major food allergens: soy, milk, fish, shellfish, tree nuts, peanuts, eggs, wheat.

Secondly, the RAST can test for IGE antibodies for anything that you could possibly be allergic to, not just these 8. They can test from rag weed to coffee.

And they are fairly accurate, more so than the skin prick test. True the only sure test is a double blind challenge, but if you are allergic to anything you are tested for it will show up, at least as a weak elevation in IGE antibodies. Now the tests don't how that accurately how severe the allergy is. How your body reacts to elevated IGEs is sort of individual and relative to the allergic load.

BTW, it does sound like your son has major reflux issues,l which could account for all the symptoms you described there. I hope you are giving him the prevacid, as the GI suggested, and hopefully he improves. Does he have other symptoms of allergy, such as hives or ecema? Stomach pain and bloating?

Sorry, we were told his RAST test tested for the 7 major allergens and that they are not always very acurate, we may have to incorporate the elimination diet and also see an allergist, that was before the test came back negative then we were told to keep on the prevacid which he has now been taking for 2 months and were told we should see results in 2 weeks and so far things are only getting worse. This all took place thru the Celiac research center. when they called and said he was negative and to just keep him on prevacid and call back with details of change i totally took this as a blow off, we are still giving him the prevacid twice daily as told. I contacted his pediatrician when the rash around his mouth wouldn't go away and he also said the RAST testing is not so acurate sometimes it will have to be done a few times, so now we are being sent to an allergist and I will contact the GI specialist tomorrow(which I should have a month and a half ago) and fill them in.I will also find out if the EE is what they told me he had, which will explain the reflux not comming under control with prevacid.

[jerseyangel]

I never knew there was such a thing. He won't eat regular peas, flat out refuses them, but never had a reaction that I can remember from eating them when he was a baby. He had hives every day though until recently, so who knows. I'd be willing to try it though. Can you buy it at Whole Foods? Thanks for the suggestion!

It doesn't taste anything like peas--I guess when they roast them, it makes them more nutty--it has the consistancy and color of natural peanut butter, but the taste is milder. In a sandwich or on something like apples, it's fine (I thought). As I remember (I'm off legumes now ), you have to stir it and keep it in the fridge.

I've not seen it at my Whole Foods--but yours could possibly carry it. I bought mine at Wegmans, which is a large grocery store.

[happygirl]

I have no idea if my food issues are allergies or intolerances, so that was my concern about the testing. i never bothered with the testing (besides the obvious Celiac 2 years ago), because I had heard about how the tests can be unreliable. Since I am pretty "in tune" with what was going on and knew/learned a lot about food, I just did the elimination method (but kind of reverse....just kept eliminating foods instead of first eliminating almost everything. Oh well-I still got the desired result!)

[shai76]

Sorry, we were told his RAST test tested for the 7 major allergens and that they are not always very acurate, we may have to incorporate the elimination diet and also see an allergist, that was before the test came back negative then we were told to keep on the prevacid which he has now been taking for 2 months and were told we should see results in 2 weeks and so far things are only getting worse. This all took place thru the Celiac research center. when they called and said he was negative and to just keep him on prevacid and call back with details of change i totally took this as a blow off, we are still giving him the prevacid twice daily as told. I contacted his pediatrician when the rash around his mouth wouldn't go away and he also said the RAST testing is not so acurate sometimes it will have to be done a few times, so now we are being sent to an allergist and I will contact the GI specialist tomorrow(which I should have a month and a half ago) and fill them in.I will also find out if the EE is what they told me he had, which will explain the reflux not comming under control with prevacid.

I would find a new specialist for him. It's common knowledge that there are 8 major allergens, and they should know this. The also don't sound like they are taking your sons problems seriously.

[AveryAndMorgansMom]

My twin daughters both have eosinophilic disorders. Morgan has EE, Avery has EGE. Morgan was diagnosed at 15 months of age after severe constipation that wouldn't get better with diet modifications. It was horrible. She could not go poop! The doctor suspected Celiac disease and did the scope even though her bloodwork for Celiac came back negative. The scope showed Eosinophilic Esophagitis. We tried an elimination diet for a few weeks (she was nursing and so I went on the diet too--6 foods only) but it didn't help her. I weaned her to Neocate Jr (an elemental formula) very quickly. She got better after about 2 weeks and went from crying a lot of the day and having rough itchy skin, to being much happier and having softer skin. Because the formula is constipating on its own, she was put on Miralax. Finally, the pooping didn't hurt and she was starting to feel better . She was Neocate-Only for three and a half months until she was scoped again. That scope was clear, so the EE was food-mediated. We then started her first food trial--rice--and it was declared a pass after three weeks of eating a tablespoon a day of it in addition to her formula. We went a few more months, but our GI doctor was not very familiar with EE. So, we went to Cincinnati Children's Hospital and met with Dr. Putnam. He put a G-Tube in Morgan because she wouldn't drink enough of the formula (she had been losing weight as she had started drinking less and less of the Neocate--It's nasty if you've ever tasted it!!!!!!!). That was in May of this year and she has been doing so much better! She had to switch to the other elemental formula, EleCare, because she started reacting to the neocate . But, it was a pretty easy switch, and she's been doing really well.

Her twin, Avery, was diagnosed with Eosinophilic Gastroenteritis (eos in her duodenum) at 15 months of age, after Morgan was dx'd (because of the genetic link and the fact that Avery had HORRIBLE reflux for the first year of life, the GI wanted to see if Avery also had something else going on). Avery's scope showed EGE, but when we tried to get her on the neocate, she flat-out refused it. There was no way she would drink it. So, I continued to nurse her on a diet of 6 foods for 3.5 months until she was scoped again. That scope was clear, so we knew the EGE was food-mediated as well. But, Avery also had a bunch of food intolerances/allergies along with the EGE triggers. That's where we're still struggling. Avery is down to four foods and is willingly drinking a tiny amount of EleCare on her own. We're hoping she'll start drinking more though, because her four foods are not enough, and I cannot stay on this diet! I've been wanting her to wean, but the dietician doesn't want me to until she can eat some protein (the formula is her only option now).

I know I probably left out tons of info, so please feel free to pm me . Also, I'm on the kids with food allergies site too. The people there are very helpful!!!

mariah

[mbg98]

So my son had his allergy appt. today and was tested for a bunch of foods doing the scratch test all of which came back negative, next step is in two weeks he will have the patch tests done and see what happens. While we were in the allergist office his GI specialist( the nurse in the office) returned my call and said that he does have EE but only in patches so its not 100% solid that he has it because his was in patches verses the esophugus bieng coated. I thought it was you either do or you don't, so iam not understanding that. I had to tell them that I would call them back to clarify that and some other stuff with them but of course they are already gone for the day! Anyway it is my understanding that EE is inflamation triggered by an allergy we are just having trouble finding what allergy.

[azmom3]

So my son had his allergy appt. today and was tested for a bunch of foods doing the scratch test all of which came back negative, next step is in two weeks he will have the patch tests done and see what happens. While we were in the allergist office his GI specialist( the nurse in the office) returned my call and said that he does have EE but only in patches so its not 100% solid that he has it because his was in patches verses the esophugus bieng coated. I thought it was you either do or you don't, so iam not understanding that. I had to tell them that I would call them back to clarify that and some other stuff with them but of course they are already gone for the day! Anyway it is my understanding that EE is inflamation triggered by an allergy we are just having trouble finding what allergy.

I wish I knew enough about it to help you out. I'm not an allergy expert, but I don't think the scratch test is the most accurate, just more of a starting point. There are some people on this board who know a lot about this though, so hopefully, you'll get some help. Just to give you an example though, my son had been vomiting within seconds of drinking milk, so we immediately stopped giving it to him. When we had his allergy test done, that's what it was originally for. They tested milk, along with some others. He came back allergic to everything except milk. They then tested it by blood and it was the highest of everything he was allergic to. I think the blood tested something in the milk, where the scratch test tested somethign else in it though....I can't remember exactly. Good luck!

[skysmom]

Hi, I don't post much here, but occasionally visit.

I just wanted to post that my ds (20mo old) was scoped for EE when he was 9 months old. He had a bunch of the symptoms but the scope/biopsy were negative. He is still FTT, has a bunch of food intolerances (IGG reactions that didn't show up on any of the standard allergy tests), and has a hard time digesting food, or having normal bm's. His celiac blood work came back negative, but we have been gluten free for a few months now and it definately has helped some, but hasn' t solved all the problems. I believe my child has a damaged gut that impairs his digestion and he continues to react to more and more food all the time, which continues the cycle of damage and not being able to fully absorb the nutrients and calories from his food. I'm just not sure if it is true celiacs that began the damage or other factors that occurred and made him not be able to tolerate gluten, and casein, and soy, etc.

I guess the reason I'm posting is because I know how frustrating and sad it is when all of our poor children are in pain, and not growing well, and have such huge lists of foods they can't eat.

I also just wanted to add that now I am making serious efforts to heal his stomach (as well as avoid his intolerances) I am finally seeing some positive results. I feel that most main stream doctors just don't hit on this area enough. My child has been to so many different doctors, specialists, etc. and been tested for everything (CF, metabolic disorders, thyroid, diabetes, celiac disease, EE) and they are good at telling us what my ds doesn't have, but have no clue where to go from there or what to suggest. Now that he is receiving high doses of probiotics, digestive enzymes, and a good mineral supplement that includes high amount of zinc (zinc aids in healing the gut), he has finally started growing again, slowly but surely and actually has firm bm's , and an appetite!!!! Basically, no doctor even thought to tell me to try these things. Only personal research and talking to other wise mothers who also had to figure it out alone. These things are extremely important in aiding the damaged stomach, and helping with food digestion, absorption, and healing.

I apologize to those who already know this or are using these supplements, but it is the only thing that has started to help my child and just wanted to share what is finally making a difference for my ds, in case you haven't tried these. I know everybody's situation is a bit different, but that fact that there are so many food allergies, growth issues, and bowel issues obviously points to damage in intestines, stomach, etc., which usually in the mean while all the beneficial bacteria is being killed off, and causing even more problems in the stomach, entire body and with the immune system. I know a lot of people on here probably have read the book or know about the scd diet, which explains all this a lot better than I did. We are easing into that now to hopefully completely heal and give him a life full of more food opportunities.

Anyway, sorry for all the rambling, I need to go to bed!

To the OP, good luck with all the testing, hope you find some anwers for your child!!

[AveryAndMorgansMom]

While we were in the allergist office his GI specialist( the nurse in the office) returned my call and said that he does have EE but only in patches so its not 100% solid that he has it because his was in patches verses the esophugus bieng coated.

This is incorrect. EE *is* by nature, a patchy disease. You're right in saying that you either have it or don't. Often you can have it, but the biopsy won't show it *if* the biopsy wasn't taken where there are eosinophils. The old standard was 20 eosinophils per high power field. But, it's also determined by what the eosinophils are doing (clustered, degranulated, etc.). A good pathologist, who is up on all the current research, should be able to determine this .

[mbg98]

This is incorrect. EE *is* by nature, a patchy disease. You're right in saying that you either have it or don't. Often you can have it, but the biopsy won't show it *if* the biopsy wasn't taken where there are eosinophils. The old standard was 20 eosinophils per high power field. But, it's also determined by what the eosinophils are doing (clustered, degranulated, etc.). A good pathologist, who is up on all the current research, should be able to determine this .

Thank you! I finally got answeres from the GI specialist today. From what I was told that in my sons case he has an abundance of "eos" in his esaphagus and they were patchy through out. She said that either he has a minor case of EE or they caught it in the beginning stages and is going to progress if we don't find the allergen. I was also told that in some cases they can't find the actual allergen that causes it, that worries me a little. His reflux is constant now it happens with everything he eats. They are supposed to call me in the AM and let me know if they will be changing him from the prevacid.

[miamia]

Hi I'm sorry I'm late on this topic but I'm only a part time poster (too busy with work stuff). I have eosinophilic gastroenteritis. Its more common in children (or at least more diagnosed) so initially I was very frustrated with trying to get info for adults, so you should have a somewhat easier time finding info for kids.

I was diagnosed with Celiac a few years ago and I did improve but never fully and then started to get a bit worse... and I knew I was totally gluten-free. So last Feb. I went in for an endo and they took biopsies and found I also have EG.

I went thru allergy testing and was found to be allergic to a ton of foods and also have allergies to enviromental stuff (mold, pollen etc.) I'd be happy to answer any questions you might have, I'm no expert and its an issue that is just getting more diagnosis therefore more info is out there about it. But I'd be happy to help in any way I can.

Susan

[/quote

how do you get diagnosed for this. I am off gluten have been forever and am still realy sick with a ton of other allergies. this is really the first I am hearing about this so I am very interested in any info you wnat to give

susan-

so besides gluten what do you ahve to avoid now?

[azmom3]

I also just posted to the other thread. My daughter, Megan, was thought to have EE or EG at one time. These are the best resources I found:

Open Original Shared Link

and

Open Original Shared Link

Cheri recommended the last one for me and got me signed up. they really helped a lot on their forum.

Thankfully her biopsy was negative for EE and EG.

As for the blood work, my son had bloodwork done and the only thing that was positive was the IGG, so I was told it couldn't be celiac. He also had 3 scopes and 2 negative biopsies. It is very possible that your son could have multiple issues, but it's also very possible that it's celiac alone since celiac can cause all of those symptoms. My son had most of the ones you mentioned, except he had D instead of C. My daughter had the C. It varies so much. The thing you need to keep in mind is that testing is soooo inaccurate for kids under 5. We went through 3 years of tests (all the ones you mentioned) until we finally just decided to try the diet and see if he improved. The difference was AMAZING.

The GI did not formally diagnose him with celiac disease because he knows I will keep him on the diet. It's harder to get insurance with a diagnosis, so he saw no need to do so since the biopsies were negative. He does believe that Cole has it, though. His dietary response has been that dramatic.

I'm not telling you to not go through with the tests, each parent has to make their own decisions. But I have been there before and going gluten-free made everything get better, even the asthma. Consider doing a diet trial since that may be the only option you're left with anyway. I really have been right where you are now with both of my kids and I know how torn you are between taking action and waiting on tests. I will pray for what you need to do to be revealed to you. I will also pray for your strength. You will need both.

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?