Diet if you didn't know what foods someone was allergic to

[USAmma]

As some of you have been following on other threads, my dd has a dx of E.E. She has a history of GI issues, reflux, vomiting, and failure to eat. She has had a feeding tube since 3 mos old.

Since there is no test for E.E. allergens that is reliable (different allergy cells than are used for skin/blood tests), we have few options with her diet. I just want her to feel better. She got sick and is back on 100% tube feeds for the moment. Her GI wants her on elemental formula. Waiting for insurance approval and delivery of it, but I know it will happen soon. I hate the idea of formula. I mean, she's almost 3. I was feeding her a blenderized one and she did well, but how do I know what foods to put in it now? And after fighting so hard to get her to eat, now we have to forbid her to eat.

I don't want to do this. When she shows an interest in food, I want to be able to feed her something. We have to keep her mouth in shape. The lack of eating over her life has already affected her speech. So, can someone help me to come up with a list of foods that are okay for almost everyone to eat, even people with food allergies? I would rather have a "yes" list than a long, long "no" list of things to avoid.

Also, is celiac's different than a wheat allergy? SHe has tested negative for celiac's through biopsy, twice.

Thanks so much for your help.

[wendy1221]

Yes, celiac's is a completely different thing than wheat allergy. Liam is allergic to wheat, but can have all of the other gluten grains that celiacs can't have.

The only advice I have is to definitely do not give her any dairy. Dairy is bad news for anyone w/ any kind of digestive issues, whether they're allergic or not. I would probably also eliminate all gluten for now, not just wheat. I think fewer foods is better for EE. Actually, going formula only is best as it allows the gut to heal, making foods more likely to pass. It's out of hand right now, so she's reacting to foods that are not triggers themselves. But if you allow her gut to heal, she will no longer react to foods that aren't EE triggers, eventually. So the plan for EE patients is to go formula only for a minimum amount of time, I think it's either 6 mos or a year, sometimes longer. THen after the gut heals, you can start trialing foods to figure out the triggers you need to avoid, and the foods that she can handle. I do not have a child w/ eos. I only know this much from lurking and reading eos posts at POFAK.

You seriously need to join POFAK. If you don't want to pay for the membership, they have anonymous scholarship deals. You just contact a mod thru the site. You can pay partially or not at all, depending on how much you can afford. There are always people there w/ extra Neocate or Elecare who are happy to spot people who are waiting for insurance to go through (not to mention help you write the type of letter that forces insurance to approve it, and approve it quickly), and there are moms on there who will have better advice than almost anyone here can give (other than Jen the peach, but she's not here often.)

[USAmma]

Thanks again Wendy. Maybe I am still in denial but I really do not want to put her on formula and restrict her oral intake totally. We have come too far. I have been reading on the net and found some research studies that indicate that combined patch and scratch tests work to cure patients of EE about 75% of the time. I would assume the others are inhaling their allergens from the air.

I tried to join that group and was kinda sad about the joining fee. I know they have scholarship. We are not poor, but we are not rolling in money either. I would rather let the scholarship go to someone who truly could not afford it. Maybe I will eventually join, but right now I need to apply that $25 to something else.

We are going to CostCo tomorrow. I always buy the girls churros. But I do not know what is in them. Dd1 will expect one and want one. Should I tell her no because her sister cannot have one? Do I let her have one even though it wont be fair to Nitara? Tough situation. Ugh!

[Chinese Pistache]

This is from the sticky in this forum http://www.hallpublications.com/title2_sample1.html

I'd feed her the lowest allergenic foods (at the bottom of the list) like millet, chicken and sweet potatoes. I'd avoid the "top 8" allergens no matter what, too.

For gut-healing, you should read the book Stopping the Vicious Cycle. It's really helpful in understanding the gut-healing process.

[USAmma]

Originally Posted by Chinese Pistache

This is from the sticky in this forum http://www.hallpublications.com/title2_sample1.html

I'd feed her the lowest allergenic foods (at the bottom of the list) like millet, chicken and sweet potatoes. I'd avoid the "top 8" allergens no matter what, too.

For gut-healing, you should read the book Stopping the Vicious Cycle. It's really helpful in understanding the gut-healing process.

Thanks again for your help! I made an appt for next week to get her the patch test. Hopefully that will help *some* although it won't provide 100% answers. I'm glad she likes sweet potatoes.

Her gut is a real mess right now. She's sick and is vomiting all the time from the mucous. Looking forward to helping her heal. I know it will take a long time but I think we are finally on the right track.

[cat19]

I tried to join that group and was kinda sad about the joining fee. I know they have scholarship. We are not poor, but we are not rolling in money either. I would rather let the scholarship go to someone who truly could not afford it. Maybe I will eventually join, but right now I need to apply that $25 to something else.

I don't mean to be pushy, but they have a whole forum for/of parents whose kids are formula only or very few foods. They have a whole forum for/of parents of kids with eos issues. There're tons of parents of kids with non-IgE allergies. They have a recipe database. I can't imagine where else you'd find such fabulous expert support and help.

And the scholarships aren't like scholarships in the real world; as far as I know they're not limited in quantity in that "real world" way; because it's an internet site, they can give out a membership without taking anything away from anyone else. Yes, you're not giving them income but you're not costing them much in bandwidth, etc.

I got a subsidized membership from them for my family and we truly had no extra money. But if I hadn't been able to bring myself to take the subsidy, I would still have been better off spending the money onthe membership even if I had taken it out of my grocery budget or my heating money, because the site is more helpful than five drs visits and a shelf full of books on allergies.

I can't recommend it highly enough, and my kid's issues are definitely less frustrating than you are facing--and the POFAK site had been a godsend to us: recipes, advice on meds, advice on treating reactions, info on cross-contamination, info on everything you could imagine.

Please re-consider checking it out; I think it would be of enormous help to you.

[thepeach80]

Put me in the 'sign up at POFAK' catagory too. It was such a help to me last year when Evan went formula only and we took away his solids. He was younger than Nitara, so it wasn't as hard, but still hard. Your question about the churros is something you can discuss on the board and get ideas from people who have been there! We try to always get things both boys can have, but we don't always and Evan is pretty good at understanding he can't have some things. If you don't want to do formula ONLY (though this would be the quickest way more than likely to get her stomach healed), I would do the top 8 elimination. Dairy, soy, egg, wheat, fish, shellfish, peanuts, and treenuts and corn (#9) would probably help. Some people do well just eliminating those, others don't. Evan was able to eat plain rice when he couldn't eat anything else. There are a lot of things out there that are JUST rice; pasta, crackers, syrup, oils, etc. There is not one food though that everyone will not react to, sadly. So anything you give her, could cause a possible reaction. You could go top 9? free for a few mos and rescope. If clean, you're good and can try those one at a time. If not, you could do formula only then, but then you've wasted 3 mos and an extra scope before really starting the healing process. Only you can decide what is best for Nitara though and her situation. There are also oral things you can do w/ her to help her keep those muscles in use and a lot of mom use ice chips for thier kids to keep the muscles moving. Anyways, that's just a little info from the board I learned when we thought Evan was EE and went through the scope and formula etc. There's so much more and some kids have less complicated EE, while others are more in depth. Hugs again!

I know it's no help, but Evan just got off his formula at 2 and if he keeps losing weight (we're really trying to add some fat to his diet) he'll be back on it soon. There was a discussion on the board today about how formula just becomes a drink after a while, you don't think of it as formula, it's just like water or juice, it's what the kid drinks.

[Chanley]

Well it has been my experience and that of other moms that when you get rid of the problem foods, they will eat a wider variety of foods.

It is crazy but the allergens become an addiction and they do not like the taste of the other things.

I can help you remove all 8 of the top allergens from your diet. It will be touch and go for a few days but it is possible.

AND many of the foods we eat which are low allergen have an indian flair

Let me know if you need my help.

Ohh and if she has a mucous problem. that almost always spells dairy.

[Chanley]

Ohh and biopsy dx for celiacs is soooooooo misleading, especially when they are that young.

In order to get a good bipsy dx, you need severe damage which often takes many years.

[grisandole]

Stay far away from gluten and dairy, they are so allergenic, and tough to digest. We are GFCF. When I was nursing ds2, he was having horrible pain, diarrhea, vomiting, etc. I did the elimination diet and gluten was the main offender...if I even ate a trace of it ds2 would suffer. Dairy was also an issue, but not as severe as gluten. That was almost 5 years ago, the beginning of my GFCF journey!

Rice, squash, sweet potatoes, apples are not usually allergenic, I'd start with those.

[JaneS]

DS has multiple food allergies dx by intradermal testing and is doing very well on a 4 day Rotation Diet. We've recently pulled eggs and nuts completely as we saw significant reactions so it was very helpful to go thru this process for us. He's allergic to so many things and surprisingly not dairy or soy... and things he's never ever had like quinoa, amaranth and millet were extremely reactive for him during testing. Weird.

What about blood testing from Immunolabs to try to narrow it down, it would be easier for you to do.

Adding more zinc and glutamine (we do bone broths but you can do supps) seemed also to be very helpful. They help rebuild gut lining.