Baffled by food allergies

[grace'smom]

I am hoping someone on this board has BTDT and can help me understand what is happening to my daughter. At the age of 2 she was diagnosed with a large number of food allergies. Too many to completely avoid them all- there would have been nothing to feed her. Prior to her allergy testing she had frequent loose stools, hives at times, eczema, frequent colds and did not grow at the proper rate, which is what brought us in for testing.

 

The eczema improved in the first year. The hives were eliminated and she began to grow and stopped being sick all the time. The stools have been loose for much of her life- probably because there's no way to eliminate all the allergens.

 

So the next time we had her tested for her allergies, many of them were gone. She got chicken, egg, and a number of other good staple foods back. She never tested positive for milk until this year, although she's clearly unable to digest lactose properly (whole different thing I know, but it's a strange puzzle). HOWEVER, everything we had leaned on that year for nutrition was now out. She became allergic to corn, soy and some other things that year I guess because we let her eat a lot of those because she's not allergic to them.

 

This past Friday we got her tested again. She's still allergic to corn, barley, rye, almonds and cashews at the same level. BUT now she's ALSO allergic to ALL nuts, OATS, milk and tomatoes (we eat a lot of spaghetti/salads/bruschetta type stuff), pineapple, coconut (I had begun making her coconut bread since she is allergic to so many grains) and I don't know what else... The list is too long to remember. But the doctor says don't lean too much on beans because legumes are related to peanuts, etc. Seems everything is related in a way that means you shouldn't eat too much of anything. But she got wheat back (which I am somewhat distrusting about because she sure seems like she has a lot of celiac symptoms the way she reacts to wheat- again, another issue but somehow it seems related).

 

I just don't understand why this is happening to her and how to make it stop. Will this ever go away? Is she going to continue to become allergic to everything she eats on a regular basis, and why does that happen? Why do people end up being allergic to so many foods and why do the allergies change every year like hers do?

 

Sorry if I sound whiney. I know we're lucky and it could be so much worse, like she could have a life threatening allergy or something, but right now I just feel so overwhelmed. She doesn't like meat. I can't figure out a good protein source and I know once I do find one I'll lean on it for meals and she'll be allergic to it next year.

 

Is this just the norm for food allergies? :confused:

 

I appreciate any advice that anyone has regarding the subject. I just want to understand it better. Thanks!!!

[Wyndie]

First :grouphug: I am so sorry. I have been in your shoes... still am actually. It doesn't have to be life threatening to be maddening.

 

During our quest to deal with rotating allergies, I have often heard that leaky gut can cause this problem. The root cause is yeast and immune dysfunction but leaky gut contributes to the rotating problem.

 

We have tried everything and are currently doing "energy work" with a Bioveda machine; in the hopes that replacing the bad memories in the CNS with good or neutral memories will stop their immune system from over reacting sooooo badly. We have seen some improvements.

 

We also eat only whole foods, nothing processed. Food is very boring here but at least we can eat it! lol Cutting out processed foods gives the body a chance to heal in that it doesn't have to constantly fight to digest indigestible foods.

 

Rotating her food is very important since her allergies rotate. Back in the day when I first started researching this stuff, I learned that the stomach lining sheds every 3ish days. So you need to give her 3 days between foods (some say 4 - it's always best to err on the side of caution with severe kids like this). In other words, Monday could be chicken and broccoli day and then you couldn't have chicken and broccoli again until Thursday. Having a menu printed up for two weeks at a time is almost essential so you can keep it all straight.

 

We have been trying to heal my children for 5 + years now. We see some improvements but have found that traditional medicine doesn't know what to do with kids with that many allergens; even dietitians throw up their hands at us! Biomedical treatments have been the most helpful so far.

 

HTH! :grouphug:

 

ETA: we use the Body Ecology Diet for yeast treatment. Diet is very key in our house! http://www.bodyecology.com (disclaimer: I work for this company but do not get anything for telling you about it). :)

[grace'smom]

So feed one food item only once in four days? Even the bread? I could alternate types of bread but then she wouldn't have any starches to eat at dinner.

[stripe]

What about rice or potatoes? Things like millet? Cassava? Starchy bananas?

 

This must be so difficult.

[Kates]

Honestly, I would say to completely remove all gluten and dairy from her diet and limit her nuts; my guess is that you will see improvement quickly.

 

Celiac can be extremely difficult to diagnose through tests, especially if a person has gotten to the point where other (non-normal allergen) foods are becoming a problem. In order to diagnose celiac, the immune system has to be working properly (as it tests for antibodies) and if it's not receiving the nutrition it needs...well, how can it respond properly, or even in a way that can be accurately tested?

 

Dairy, eggs, and nuts can be incredibly difficult to digest in the beginning stages of healing from celiac; if the body doesn't make the proper enzymes to break down the nutrients, it can cause allergen-like reactions. If she's at the point where tomatoes and coconuts are now popping up...seriously, if you at all suspect celiac, I would say to take her gluten and dairy free asap. As you see healing taking place, you can very likely reintroduce dairy with some Lactaid (I know for sure the chewables are gf) and then nuts and eggs. (Watch for reactions - if she reacts, take those foods out and reintroduce them a few months later.)

 

There's still very little that medical science knows about celiac; many dr's are now moving toward using diet elimination as a diagnostic tool, especially on children (where the endoscopy may be difficult or invasive).

 

Hope that helps :) For many people with unexplained food reactions, gluten is at the root...but medical science still can't explain it with tests, so not all dr's will steer you that way. I would really say to try the above, from what you've described it really sounds like celiac.

[rafiki]

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[rafiki]

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[cin]

(HUGS) Have they mentioned EE http://www.apfed.org/

 

 

 

Was going to ask about EE. I have 2 friends who have boys with this. They both have EE and are allergic to various foods. The one has a severe case and is allergic to ALL KINDS OF STUFF. For a while, he could eat only bison and moose for meats. He is also allergic to a boatload of other stuff too. He gets tested every year and they all change. In addition, he gets an edoscopy annually to check the progression of the EE. He takes all kinds of vitamin supplements because he can eat so few foods, including calcium, D3 ( I think that was the latest one I heard about) and a multi-vitamin.

 

While I know this probably isn't what you want to hear, it might help you to knwo that you are NOt alone! There is a GREAT EE clinic at Children's Hospital here in Cincinnati. If you live anywhere in the general vinicity.

 

Oh, I also wanted to tell you, he was allergic to soo much that at one time, to limit his reactions, but be able to feed him, she was rotating his mildly allergic foods in 4 day rotations.

[grace'smom]

That's really strange because my father has a disorder of that nature. I don't remember exactly, I'll have to call him, but he has terrible acid reflux and chokes on his food a lot. He had to have surgery on his esophagus as a child because of it. But Grace has never choked on her food. Ever. Only one time has she ever choked and it was when she was a baby and got into the dog food bowl. She also does not complain of any regular stomach pains (unless she just ate corn). Her main issue involves very loose stools and sometimes, rarely, hives.

 

I've suspected celiac for a long time, but why would she show up as clear on the wheat allergy if she had celiac? Wouldn't she still show up as allergic?

 

Thank you guys SOOOO much for helping me try to puzzle this out. It's so comforting just to know that other people have been through this and have information to share...

 

My husband and I were just talking about getting her DNA tested for the Celiac gene. It would at least tell us if that disease is even a possibility. Has anyone here done a celiac DNA test?

[Wyndie]

I was just reading an article in Living Without. They mention that someone who is IgA deficient, will not show up as celiac, but can still have it anyway. If you insist on a test to take out gluten, you might want to ask for an IgA to see if testing is even accurate.

[grace'smom]

I was just reading an article in Living Without. They mention that someone who is IgA deficient, will not show up as celiac, but can still have it anyway. If you insist on a test to take out gluten, you might want to ask for an IgA to see if testing is even accurate.

 

She can't have the IgA antibody test because she hasn't eaten wheat in years, but I was thinking of getting her tested for the Celiac gene. There's two genes associated with celiacs- if she didn't have either gene we'd know it's not celiac.... I think, LOL. I never really know what I think I know, so take that with a grain of salt.

[Cricket]

I've suspected celiac for a long time' date=' but why would she show up as clear on the wheat allergy if she had celiac? Wouldn't she still show up as allergic? [/quote']

 

Celiac is different than a food allergy. It is a reaction to gluten that happens inside the small intestine, not an overall histamine response. I've had several tests done for celiac and they all were negative. However, I do know that if I eat wheat or other gluten grains like barley, I have diarrhea that can last 1-2 days. So I avoid it. I've recently had some allergic reactions to different foods. My doctor put me on a probiotic immediately. She also did some vitamin deficiency tests and found I was severely deficient in several key vitamins that regulate the immune system. She gave me a list of what I needed to take each day. Since starting the vitamins and probiotics I have felt much better and can tolerate foods I couldn't eat before. (I still stay away from sunflower seeds though since I had an anaphylactic reaction to them!) I hope you can figure some things out. A book I highly recommend is 5 Years Without Food. It clearly explains a rotation diet and lists all the foods into family groups so you can easily see what you can eat on certain days. And if makes you aware of foods you might not have heard of but you can find at natural food stores and can add to her diet. I've been following a rotation diet for about 6 months now. My doctor explained that the digestive system cells renew themselves every four days. If you limit how many times those cells are exposed to the same foods, you can limit the chance of developing new allergies.

[Kates]

 

I've suspected celiac for a long time' date=' but why would she show up as clear on the wheat allergy if she had celiac? Wouldn't she still show up as allergic?

 

My husband and I were just talking about getting her DNA tested for the Celiac gene. It would at least tell us if that disease is even a possibility. Has anyone here done a celiac DNA test?[/quote']

 

Actually, it wouldn't - it's not an allergy. It's an autoimmune reaction.

 

What happens with celiac is that somehow, the gluten protein (which is really complex and doesn't break down into amino acids unless you have multiple stomachs, like a cow) gets into your blood system and your immune system tags it, similar to a virus or bacteria. It's so complex that your body doesn't recognize it as a nutrient. Whenever it's located, white blood cells are sent to the site of "infection" - the top area of your small intestine, where nutrients are released into the bloodstream - and not finding anything to fight off, they kill your villii instead. The villii are the little fingerlike things on the intestinal lining that allow nutrients to be absorbed into your system.

 

Well, once they're gone, you can't absorb nutrients, no matter how much you eat. You're basically starving yourself, even though you may be eating well. Without proper nutrients, different systems start malfunctioning in different ways - some are very obvious, others not so much until something like diabetes (pancreas not working) or cancer set in. This can manifest in GI problems, behavioral (neuro) problems, muscle and bone aches, problems focusing or processing, phantom pains, lack of growth/failure to thrive, low bone density or high porosity (easily broken bones), dental problems...the list goes on.

 

Another thing that often happens is inability to tolerate foods that were once fine, because your body no longer produces enough of the proper enzymes to digest them.

 

Once you take a celiac completely gluten free, you'll generally see some relief of symptoms in 24-72 hours, with notable improvement within a few weeks. Because of damage to the digestive system (depending on how severe it is), you might have to limit or eliminate foods with really complex sugars and/or proteins for a few months to a year while the system builds itself back up. This is totally normal, there are a lot of gf foods out there that are dairy, nut, and/or egg free. There are also a lot of restaurants that are now able to accomodate gf and other intolerances/allergies.

 

One of the best cookbooks I've found for gluten and/or dairy free with kids is Cooking For Isaiah by Silvana Nardone. Can't give it a high enough recommendation! (I'm baking the pizza crusts from her book right now...yum :) )

[rafiki]

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[Mom0012]

To start, I haven't read all the posts. I'm sorry you are going through this. My son has a lot of allergies, but nothing compared to what you are talking about.

 

I would do an elimination diet. To do this, you would usually eat a few unusual foods that she is unlikely to have been exposed to and unlikely to be allergic to. If you google "elimination diet", I'm sure you'll get lots of hits. If she improves, I would add one food at a time, may once a week or once every two weeks.

 

Also, consider removing gluten and dairy completely for at least a few months. Those would be two of the last things I would add in.

 

You could also try a rotation diet. I have heard that can be successful in helping to avoid developing allergies to new foods.

 

Lisa

[Ellie]

I've suspected celiac for a long time' date=' but why would she show up as clear on the wheat allergy if she had celiac? Wouldn't she still show up as allergic? [/quote']

I suppose she could still be allergic to wheat as well as having celiac.

 

My closest friend is a worst-case-scenario celiac. When you were describing your dd's symptoms, I heard my friend talking. :-/

 

If you go to a gluten-free diet, it will take also care of any wheat allergies, yes?

 

My husband and I were just talking about getting her DNA tested for the Celiac gene. It would at least tell us if that disease is even a possibility. Has anyone here done a celiac DNA test?

I don't know how long it takes to get back results from a DNA test, but you could eliminate gluten tomorrow, Kwim?

[mommytobees]

Honestly, I would talk to your allergist about something called FPIES.

 

http://www.kidswithfoodallergies.org/resourcespre.php?id=99

 

Good luck.

 

kris