any tips on weight gain?

• By CaraEoEMom
• Reply 3289341
• August 14, 2012 at 7:51 am
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Our daughter lost 25 pounds last year due to her EoE, but she gained back 10 pounds just during her 4-week dairy trial. So if dairy is okay for your son, I'd suggest full-fat dairy products.

• By Jessica-EMPOWER-WA
• Reply 3289592
• August 14, 2012 at 9:28 am
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I would caution against trying dairy, as it is the #1 food allergy and eos trigger food. I would also suggest to Cara that a weight gain that quickly might possibly be inflammation from the dairy. Sorry. :( When I eat my trigger foods, I can gain 5-8 pounds overnight.

Are you breastfeeding? Breastmilk is very calorie dense as long as your diet includes good healthy fats (and you omit your son's allergens from your diet.) If not, you might consider supplementing with an elemental formula under the supervision of a dietitian. Other calorie and nutrient dense foods you might try are coconut milk and avocado, but they are allergenic for some.

• By wildehailey
• Reply 3289651
• August 14, 2012 at 9:47 am
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He has went through a lot of testing and remarkably he is not allergic to milk products but still his weight yoyo's...we bought him the clear pediasure lastnight since the regular contains soy so maybe that will help. He eats constantly more than his twin sister and is still so much smaller. I tried to breastfeed but avoiding all the foods he is allergic to was impossible and eventually it totally depleted the amount I could supply, but I will talk to his allergist about maybe coconut milk and see what he says.

• By wildehailey
• Reply 3289926
• August 14, 2012 at 11:00 am
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And we supplement Elecare Jr, but he HATES it.

• By Jessica-EMPOWER-WA
• Reply 3290541
• August 14, 2012 at 2:57 pm
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Dairy can still be an eos trigger even if you're not "allergic" (IgE) to it. Tests for dairy especially are very unreliable.

• By wildehailey
• Reply 3290665
• August 14, 2012 at 3:50 pm
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Yeah, his gastroenterologist and allergist don't want to take him off of the milk unless it is absolutely needed. He is still a baby, he gets most of his fat from milk so they don't want him off of it unless it is 100% necessary. Milk products, fruit, and veggies are about the only thing he can have so until they tell me otherwise or he starts having problems, which he isn't right now then we aren't taking him off.

• By Jessica-EMPOWER-WA
• Reply 3290745 · In reply to 3290665 by wildehailey
• August 14, 2012 at 4:30 pm
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Has he scoped clean while eating dairy? Are you GI and allergist well-trained in EGIDs? Because milk is the #1 food trigger, and because it often is a false negative on allergy tests, they should at least suggest you remove it for a period of time and then reintroduce to see if it produces symptoms (unless he scoped clean + no symptoms while on it.) He may be having a hard time gaining weight *because* he's still eating trigger foods, such as milk.

• By vdel
• Reply 3291470
• August 14, 2012 at 10:32 pm
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I have to agree with concern over milk still being in the diet if there hasn't yet been a clean scope. Jessica, do you remember the figures on this presented at the conference? As I recall, it was a very, very high percentage of eos patients who have eos reactions to milk protein (not the same as being allergic, testing allergic, or having IgE reactions). Also keep in mind that allergy testing is a poor indicator of what the eos triggers actually are. Oftentimes, eos kids gain weight very quickly once the eos trigger foods are removed. My son, for example, gained 7 lbs in 2 months once he was taken off all food and put on elemental formula only. It is worth talking to your doctors about again. Many eos kids just don't gain well until the safe diet is found.

• By Jessica-EMPOWER-WA
• Reply 3291562
• August 14, 2012 at 11:20 pm
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Dr. Spergel mentioned at the conference that skin testing for dairy had the worst negative predictive value (NPV) of any food studied, at only 32.4%. Meaning that if you test negative to dairy, there's only a 32.4% chance that test is accurate. He said that pretty much everyone should take out dairy, regardless if they test positive or negative. (From my notes- http://empowerwa.blogspot.com/2012/07/2012-apfed-conference-part-2.html)

• By wildehailey
• Reply 3291623 · In reply to 3291562 by Jessica-EMPOWER-WA
• August 14, 2012 at 11:58 pm
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He sees Dr.Johnston a Dr who has studied EoE for years and attended many APFED conferences, parents travel from Florida, Alabama, and Tennessee to see him and he works in Charlotte NC. His scope showed less count after being off of the soy and on the milk only there were less present. I think every patient is different. I can tell when foods are bothering my son by his bowel movements if he has uncontrollable diarrhea all day I know he probably had something with soy. where if he has only milk, fruits, and veggies he is a normal happy child with no belly aches and no trouble swallowing. Braylon refuses to take the elecare or neocate, so taking him off of pretty much the only source of his protein right now when he is having no problems would be neglegent. If he starts having trouble we will have to try something else but since his doctors are awesome and they have studied much more about the disease my trust is 100% in their hands. And every child is different and every doctor has a.different patient plan, so far this is working for Braylon that doesn't mean that it will work for everyone else. And skin allergy tests are almost negative with every allergy with EGID's I KNOW that half of his allergies don't show up on tests we have found them through trial and error, since he is so little and cannot tell me what things make him feel bad I have to trust my gut and my motherly instincts which is the whole reason he was diagnosed at 10 months instead of later on like other children. A mother knows her child like no other. And his Dr said almost every food your child will ever consume will probably contain traces of soy, wheat, egg, extc. It is almost impossible to keep things from getting contaminated with allergens thus why he is still having problems. But when we did a total elimination diet and slowly added foods back milk was never a problem.

• By CaraEoEMom
• Reply 3291933
• August 15, 2012 at 7:22 am
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Wow! Quite a backlash against dairy! I only suggested it since it sounded like you had already determined what his allergens are & are not. If you had already determined that dairy is safe & your goal is weight gain, then the high fat & protein content in dairy seems like a good place to start. Unfortunately, the biggest difficulty in EoE is that EVERY child is different & there isn't one standard that anyone can follow...but best of luck to you & all of us struggling through this EoE maze!

• By Jessica-EMPOWER-WA
• Reply 3292376
• August 15, 2012 at 10:13 am
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I agree that mothers know best, and that every EGID patient is different. (Except that EGID researchers almost universally say that dairy is the #1 trigger and should be removed.) You sound like you're not open to these suggestions, but I will say one last time that unless you've had a clean scope, you can't say that you know what all his triggers are. If you got a clean scope after the elimination diet and then added back dairy with no histologic or symptom changes, then I would agree- it's safe! But having "less" eosinophils is not the same as having a clean scope, unfortunately.

My daughter has different symptoms to different foods. Most foods give her diarrhea, but not all of them. Some are much more subtle, and we couldn't see them until we pulled the foods and trialed them multiple times to rule out all other variables. We really thought she was symptom free on her limited diet (when she was diagnosed) until we pulled her last 'safe' foods and put her on formula. Only then did we see that had been still struggling.

I know that you're hesitant to change his diet at all, so have you considered swallowed steroids to get rid of the remaining eosinophils? I honestly think that once the disease is completely in remission, he will gain weight much easier.

• By vdel
• Reply 3292645
• August 15, 2012 at 11:51 am
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I just want to say that my son's allergist is Dr. J too, and he is awesome! I'm really, really glad you have great care for your child!!! That makes SUCH a big difference! So, I think that following your instincts and his advise is the best possible thing you can do. And you're right, every egid patient is so differently, and it is such a mystery for all of our kids.

Our family and medical team have had to stray away from the norm as far as the "proper" treatment for EoE at this time, due to other more pressing medical concerns. At first, I was scared that we were choosing to go away from what is proven in research, but now that we are on this path and doing ok with it, I feel better than ever about the hard decisions we have made. I think that what we all learn in this journey is that we make the best decisions for our kids with the information we have at that time, and we can't have regrets. Do the best we can, trust our instincts, trust our doctors, get them the best care possible, and it will be ok. It sounds like you are really doing that!

• By KellyB1
• Reply 3296392
• August 16, 2012 at 5:33 pm
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Could someone explain what the scoop test is.

• By vdel
• Reply 3297203
• August 16, 2012 at 10:45 pm
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Do you mean scope?

• By KellyB1
• Reply 3297287
• August 16, 2012 at 11:23 pm
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Sorry. I misread. I know what a scope is. Have one every six months. Thought there was something I didn't know about.

• By KellyB1
• Reply 3297289
• August 16, 2012 at 11:23 pm
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Sorry. I misread. I know what a scope is. Have one every six months. Thought there was something I didn't know about.

• By wildehailey
• Reply 3299965
• August 17, 2012 at 10:53 pm
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Oh and I didn't mean to be rude, if I came off that way! We did the patch test and went back to Dr.J on Thursday Bray tested positive for beef,chicken,eggs,oats,green beans,sweet potato,soy,peanut,blueberries,and pork. Still no allergy to milk or wheat yet. I also met with the nutritionist there and she is against taking him off milk or wheat until he starts showing signs otherwise. Because he is so little and is allergic to every meat he will eat...but hopefully taking him off of the foods like oats,chicken, and green beans which I fed him religiously because I didn't know will help with the scope test, but so far avoiding those foods he hasn't had diarrhea in over 24 hours which I am praising God for because he was literally having diarrhea everyday to the point where they diagnosed hin with allergic colitis...also has saved me like 6 diapers! Lol I was just wondering of you guys knew about the genetic thing like do more than one of your children have it? My son has a twin and I am starting to worry about what the chances are of her having it? She seems to have similar problems occouring with the green beans and chicken.

• By ln4182
• Reply 3365264
• September 10, 2012 at 11:49 pm
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sounds like you have seen improvement....our son is on coconut milk and is 20 months old. he went almost 6 months drinking no milk ( to this mommy's horror!) because he had such an aversion to dairy that made him not want any sort of milk. he finally, recently, started accepting coconut. he is allergic to turkey and beef, along with the dairy/egg/nut combo. he also is in a big refusal mode to many fruits and veggies, and i struggle with making him eat because i worry there may be more allergies there. we live off of chicken, and dairy free fruit cereal bars! :) does your son still vomit quite a bit? ours has improved, but still gags/vomits at least once a meal. that hasn't gone away even with swallowed steroids. improved, but still there.

• By EOEMom1
• Reply 3365770
• September 11, 2012 at 8:29 am
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hi,

I have 3 kids 2 boys and a girl...the boys have food allergies the oldest(12) also has EE recently diagnosed

when my 9 yr old was little he had to be on neocate and we added 2 tsps of olive oil to his drink each time because they wanted to make sure he was getting enough fat in his diet.(I think between the time he was 6 months and 3 yrs or so at least)

good luck....we are having the weight struggle with my 70# 12 yr old right now.