Experience with Food Allergies and/or Eosinophilic Esophagitis (EE) - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 12 Old 07-26-2012, 02:30 PM - Thread Starter
 
myllissa's Avatar
 
Join Date: Sep 2007
Location: Colorado
Posts: 98
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I'm looking for anyone with any experience with Eosinophilic Esophagitis (EE) and/or food allergies.  My 4.5 yo DS was recently diagnosed with this along with several food allergies and I am unsure with how to proceed with this diagnosis. He is allergic to:

 

- Egg yolks

- Cane sugar

- Beet sugar

- Chocolate

- Oranges

- Apples

- Carrots

- Barley

- White fish

 

I have no idea what the next step is or who or what will help us down this path.  His pediatric GI specialist and his allergist are of no help and only recommend an elimination diet and see what reactions are without the offending foods and what they are when they are integrated back into the diet.  Great.  Then what? What about at school while we're doing this diet? What am I supposed to feed him? He already has self-restricted his diet to only a handful of foods, all of which have at least one of the allergic items.  I can't supplement with pediasure, boost, ensure, or anything else easily obtained from the store because they all have sugar of some sort in them even if I eliminate all food sources.  It isn't like my DS's allergic reaction is anaphylactic, it is very distinct to his condition, so it isn't like I absolutely need to avoid any and all contact like a severe peanut allergy or something. He gets diarrhea, constipation, severe stomach pains/cramping, vomitting, reflux, no appetite, weight loss, headaches, things like that.  I've found that not all foods containing these items bother him, which is very difficult since I have no idea when he'll flare up. Somedays a food will bother him, and other days it won't.  

 

I'm so frustrated and I don't know where to go.  I called and made an appointment with my son's PCM to get a referral to see a dietician in hopes that they can help me navigate this. Any words of advice? I cross posted on the allergy boards, but haven't had any luck.  Thanks for any input you can give!


Myllissa (31) + DH (32)  = DS (4), & Expecting Baby #2 Due Febuary 2013!

 

myllissa is offline  
#2 of 12 Old 07-26-2012, 04:16 PM
 
sbgrace's Avatar
 
Join Date: Sep 2004
Posts: 9,213
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Many of kids with this start on an elemental formula only, then rescope to assess healing, slowly adding things and scoping to check for damage. It sounds like you need a new GI to me.

I am going to suggest http://community.kidswithfoodallergies.org/ as they have an eosinophilic subforum. They will be a great help because they've been there.

It's scary to be starting school facing this. My son was diagnosed with anaphylactic allergies right before his K year. We were already planning to homeschool but I remember feeling like I would have been even more of a basket case otherwise. As it was we lost almost everything he was eating due to cross contamination and it was overwhelming so I know some of what you are facing.

If they know x and y are safe I would send that to school with him. He would wash hands before eating. Can you meet with the principal, teacher, and school nurse ahead of time perhaps?

Rachelle, mommy to 8 year old boys! 

My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement

sbgrace is offline  
#3 of 12 Old 08-01-2012, 11:14 AM
 
Leapingly's Avatar
 
Join Date: Jul 2011
Location: Endwell, NY
Posts: 7
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

My little guy has EE but not the food allergies part.  Per my reading, you do go to an elemental diet and then rescope.  In the meantime, is he taking one of the medications to get the eosinophil count down?  My son is on the budesonide slurry (Pulmicort mxed with 10 packets of Splenda and then flavored with Crystalite powder to make it yummy).  The other option is dry swallowing the inhaler.  Both will help even while eating the offending foods -- not totally eradicating the EE, most likely, but reducing some of the side effects and suppressing the auto-immune reaction a bit.  So maybe he might still have diarrhea but not vomiting, or he might vomit less frequently in a day, stuff like that.

 

My son's ped GI says his is likely not due to food allergies because of the GI tract responses (just diarrhea).  Per the allergy testing, there are no known allergies.  Of course, as you know with allergy testing, it only tests IgE response to the specific foods they test for ... so my son could be eating something, pop allergic to it, inflame his EE, but it not be caught because the allergy test didn't look for that exactly.  So that said, the medication is really the only way to reduce the eosoniphils if you AREN'T going to go elemental.  And we haven't. 

 

Did you try the Sidekicks and Breeze options?  They are made by Pediasure and Boost, respectively, and are juice drinks that have the high calories that Pediasure and Kids' Essentials both have.  (250 cal/8 oz).  Your ped GI should have samples you can try.  I order my son's Boost Breeze from Amazon - it makes a nice change from Pediasure on hot days.

 

Good luck to you all -- we're newly diagnosed too and it sure is a lousy disorder, isn't it?

Leapingly is offline  
#4 of 12 Old 08-01-2012, 11:42 AM
 
Jenga's Avatar
 
Join Date: Sep 2011
Location: Mid-Atlantic area
Posts: 145
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Our son has Eocinophillic Collitis (no upper tract issues, just diarrhea and the lower GI tract showed as where the problem was on the scopes).

We did not do an elemental diet. We eliminated foods and saw results. Eliminated more and saw very good progess. EE allergies are not IgE (the most common) food allergy. They are an immune system response to foods or other things. He was negative on the RAST and other, very very good, blood  testing and they won't do skin testing because of that. You can't test for EE "allergies" with RAST, ELISA or skin testing anyway. It is very likely that nothing will show on the tests.

 

 

If my kid had a LOT of allergies AND EGID I'd do the elemental formula. Yes, it sucks. It sucks a lot. However you have to figure out what the issues are and the only way to do that properly is to do the elemental formula "reset" and then add foods back in. We may do that  perhaps we may try the meds with our son if his blood work shows that other problems have not resolved. He was negative for celiacs on biopsy but + in bloodwork. He was also anemic. This kid eats a LOT of leafy greens and meat so I know it isn't because he can't get natural sources of iron. It showed his body was being damaged from the EC. Yes, it will suck majorly, but if this is how we can stop his body from being damaged then we will do it. I would rather do not now than wait 6 months or a year to do it.

He's also got behavioral and textural  issues which are common with EGID. We're working on them with great results.

 

Our 9mo has hives from tomatoes and bloody green poop when I eat dairy. She is growing slowly, declining but still on the WHO chart, but she also has been sick plenty of times. Her ped is cautiously optimistic and  "not worried yet" but her growth problems are much worse than my son's. He was a big kid but a slow gainer. Maybe is it just who he is, I am not sure, but I do know that he bulked up and put on 6lbs when we cut out milk alone. Then we cut out wheat, corn, oats and sesame. He always has special foods. There have been slip ups at church. It happens. What matters is that people know he's on a diet and he knows his restrictions and that he grows to understand why. Right now he's 4 and he thinks that he got them when we moved to Maryland from Germany. In Germany he didn't have food allergies. Makes sense if you're 4! LOL :)

Jenga is offline  
#5 of 12 Old 08-01-2012, 11:48 AM
 
Jenga's Avatar
 
Join Date: Sep 2011
Location: Mid-Atlantic area
Posts: 145
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I want to add that I met with his VBS teachers. I have him wear a food allergy bracelet. I meet with his Sunday school teachers and they note his allergies on his name badge.

 

We talk to and educate people. He is learning to tell people he's allergic. It's a hard thing for a little kid. But it has to be done so he can be safe. I provide food at parties and at church. I pre-plan with the places we will be eating and I look up menus online. I bring food to my inlaws place.  They are trying to understand, but it is a lot. We just do our best to make people aware and take the guess and worry out of it by providing his own food.

Jenga is offline  
#6 of 12 Old 08-02-2012, 12:55 PM
 
Leapingly's Avatar
 
Join Date: Jul 2011
Location: Endwell, NY
Posts: 7
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Jenga, I am trying to understand what you stated.  You said EE allergies cannot be determined through skin testing.  Does this mean that the child can still be allergic although he did not respond withan IgE response?  If so, how to determine, absent of symptoms, if a child is allergic to X?

Leapingly is offline  
#7 of 12 Old 08-02-2012, 03:06 PM - Thread Starter
 
myllissa's Avatar
 
Join Date: Sep 2007
Location: Colorado
Posts: 98
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Thank you all for your feedback!  I have suspected that even though my son has tested negative for certain foods, I do see a reaction, so we try and reduce or eliminate those foods.  The problem we are running into is that he is so limited by his multiple sugar allergy.  I've started to identify my son's allergies with various places he frequents so the care givers there can be mindful of it.  We are seeing a dietician on 10 Aug, so I'm hoping to get some assistance in creating a dietary plan.  My son does have the behavior and texture issues associated with EoE and that does limit his already restricted diet.  He sometimes seems to be open to eating other foods but when it comes time to fulfill those agreements, he balks.  In addition to the behavioral and texture issues, we have speech issues as well.

 

Yesterday, we had his tonsils and adenoids removed and put tubes in his ears.  The tonsils and adenoids seemed to be aggravating the EoE (mostly gagging and other obstructive symptoms) and the allergies I'm sure have led to triggering the ear infections.  His ability to hear was starting to decline and he was experiencing sleep apnea and has always snored.  After maybe 8 hours, post-op, he was up and "running" around, almost at full speed and he has shown remarkable improvement in his speech and hearing.  He's never been able to say truck or other words with a "tr", and last night he came up and asked me to play monster trucks with him, and he said truck perfectly for the first time in his life.  When I was making food in the kitchen, he heard me stirring some noodles and asked what that noise was.  He had never heard the sloshing sound noodles make when they are stirred after being drained. He heard music in the other room and perked up and sang, for the first time in his life, and asked what that sound was.  He says my and my DH's voices sound different.  He's talking more softly and I don't have to call his name several times or tap him on his shoulder to get his attention.  My son is asking to eat, which he has never done. He has a better appetite (though nothing new in variety).  Removing the irritants and obstructions seems to have alleviated some of his EoE symptoms for now. 

 

I am concerned about the rush of white blood cells to the surgical areas as that is what causes the EoE, right? We are being careful in limiting allergic triggers, especially right now as he heals because we don't want to slow or disrupt that process.  It is nearly impossible to find sugar free, dairy free icecream/popsicles for him.  We found a coconut milk icecream sweetened with agave syrup that he likes, so there's that.  I'm worried about him losing weight during this time, which is normal after a tonsilectomy due to the all liquid/soft food diet.  He is already failure to thrive due to the EoE and doesn't have anything extra to lose.  He has never liked soup or broth so that won't work.  He can't eat applesauce because of his apple allergy.  We have found that most juices are a blend and not pure, so even finding pure grape juice is a challenge because most are mixed with apple.  We're trying different foods and observing his reactions more than anything because we just don't know what to expect or how to handle this.

 

I'm hopeful that the surgery plus seeing a dietician next week will continue to improve his quality of life.  We see his allergist and pediatric GI specialist at the end of the month for an evaluation.  I don't think that my son had anything other than upper GI testing done when the endoscopy was done last month, so I'm curious about asking the doctor to do lower GI or a colonoscopy to rule out those regions or things like Crohns.  Does anyone have experience with that?


Myllissa (31) + DH (32)  = DS (4), & Expecting Baby #2 Due Febuary 2013!

 

myllissa is offline  
#8 of 12 Old 08-03-2012, 02:30 PM
 
Jenga's Avatar
 
Join Date: Sep 2011
Location: Mid-Atlantic area
Posts: 145
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Leapingly View Post

Jenga, I am trying to understand what you stated.  You said EE allergies cannot be determined through skin testing.  Does this mean that the child can still be allergic although he did not respond withan IgE response?  If so, how to determine, absent of symptoms, if a child is allergic to X?


You cannot do testing for EE allergies to determine what exactly is causing them. If the child pops up with IgE allergies as well, they are different. The only way to know is to eliminate and see the problems change or to do an elemental formula diet and add foods back in one by one.

Yes, your child can still be allergic even if nothing shows up on RAST or any other tests. My kid was. He had lots of tests and not a one showed anything. He was a normal, healthy kid according to all the tests we did over a 2 year span.

Only he wasn't and when we saw a doctor at Johns Hopkins they scoped him (both ends) and we have had to eliminate things even now, months after the scopes, when he seems to have a reaction (he gets rashes and explosive diarrhea). There are symptoms for EC but since Eocinophillic disorders are rather rare, they get misinterpreted for other problems. They told us he had collitis, "toddler diarrhea", lactose intolerance (he does, actually, confirmed by a test done on his stomach enzymes), an inability to process milk fats, possible sugar malabsorbtion and even did a test for Cystic Fibrosis. One doctor has told a friend that her kid is just not potty trained and when he is potty trained he will stop having explosive diarrhea problems (nope.)

Jenga is offline  
#9 of 12 Old 08-12-2012, 05:25 PM
 
devon's Avatar
 
Join Date: Jun 2005
Posts: 280
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Jenga View Post


You cannot do testing for EE allergies to determine what exactly is causing them. If the child pops up with IgE allergies as well, they are different. The only way to know is to eliminate and see the problems change or to do an elemental formula diet and add foods back in one by one.

 

 

That is not quite fully correct.  It is correct that EoE is a non-IgE mediated allergic response.  However, about 70% of kids with EoE are able to remove the foods that they tested positive to on their skin prick testing and simply by removing these foods, their EoE is able to be cleared up.  Alternatively, 80% of kids are able to simply remove the top 8 allergens (dairy, eggs, soy, wheat, nuts, tree nuts, fish, shellfish) and this will clear up the EoE.  96% of kids are able to be cleared by using an elemental formula (only the formula).  These numbers are from a really interesting and good read:

Comparative Dietary Therapy

 

Steroids are really only going to 'mask' the problem - they do clear up the inflammation/fibrosis in the esophagus, but for the majority of children, when they stop the steroids, the EoE comes back because the cause has not been removed (food).  Many parents choose not to go this route because of this.  It is not uncommon for a doc to recommend a 8-12 week trial of the steroids to get the esophagus in 'good shape', and then try to figure out the foods that are causing the problem. 

 

I HIGHLY suggest going to Kids With Food Allergies (the website linked in the PP) - it has a whole forum exclusively for EGIDS (eosinophilic gastorintestinal disorders).  It saved my sanity when my son was diagnoses with EoE and EG a year ago. 

 

Quick question - how did you get that list of allergies that you originally posted?  Have you seen direct IgE reactions to these foods, or gastrointestinal reactions that you can directly tie to these foods?  The reason I ask is that these foods (most of them) are highly uncommon for IgE reactions, and the majority of people are not able to determine their child's EoE triggers without doing some kind of elimination diet.  The other reason I ask is because of the presence of sugars.  Generally, pure 'white' sugar (typically cane sugar) is considered a 'freebie' for kids with EoE - meaning that the extreme vast majority of kids can have it, even when on an elemental diet.  I can only think of a few kids with EoE (and I know via message boards a lot of kids with EGIDs) that can't have sugar, and it is due to missing an enzyme for digestion, not the EoE.  In fact, I can't think of another kid who can't have either of those sugars with EoE.  Not saying that it isn't possible (because by now I've learned with EoE that MANY things are possible) but it is really strange and maybe points out that something beyond EoE may be going on.

 

Check out Kids with Food Allergies.  They have a lot of good resources and an excellent recipe database.  They also have lots of mom's who are used to cooking with very limited ingredients so can help.  My kiddo was off of a lot of those foods and we were able to manage a good diet for him.  You have to make most things from scratch which stinks but it is possible.  He's currently on an elemental diet and trialing sorghum grain - you wouldn't believe what you can make with just sorghum, oil, sugar, and water!

devon is offline  
#10 of 12 Old 08-19-2012, 08:31 PM
 
DeChRi's Avatar
 
Join Date: Apr 2002
Posts: 3,999
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

A lot of good info here.  I have a 4.5 yr old with EoE, a 2 yr old with EoE, and a 4 month old that is manifesting the same.  My 4 year old has never scoped clear but we got her down to 8 eos per hpf going top 8, corn and beef free. We have trialed and failed corn and egg since then.  My 2 yr old has failed all foods and is currently elemental.  They both test negative to nearly everything on blood, skin and patch testing. There are a lot of directions to go based on your specific situation. Do you have a GI and Allergist that have experience with EGIDs?
 

I see that you are in COlorado. We travel out of state to Denver actually, to see Dr. Furuta and Dr. Atkins at Children's COlordao/National Jewish....the Eosinophilic DIsease Clinic. I would highly recommend them if you have the ability to move care there.

DeChRi is offline  
#11 of 12 Old 08-19-2012, 08:45 PM
 
pek64's Avatar
 
Join Date: Apr 2012
Posts: 2,502
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Responding to the grape juice comment.

Welches does have a 100% grape juice (concord) juice.

Organic concord juices : Santa Cruz, Lakewood (our preference)

Food allergy general info: brands can differ in ingredients, so you may need to be very brand aware.
pek64 is offline  
#12 of 12 Old 08-20-2012, 04:20 PM
 
Jenga's Avatar
 
Join Date: Sep 2011
Location: Mid-Atlantic area
Posts: 145
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Can anyone give me info about skin testing? I was told that we cannot skin test our son because it won't make a difference. I would love to do more testing if it would help is to figure stuff out

 

 

Our 9mo has hives from tomatoes (not a contact rash, my son had that, it is true hives all over her head, chest and arms) and she also gets green stool with bloody streaks, bags under her eyes and serious crankies when she or I eat dairy. Worse than it was for my son.

Jenga is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off