I'm At My Wit's End! Please Help Me...

[zebrabelly]

First of all, I should say my daughter has not been diagnosed with celiac disease. However, a friend of mine who has a couple kids with the disease told me there are some parents of kids with multiple food allergies on here so I am hoping I can get some help. I hope this is the right forum.

A little history... My daughter turned 4 in April. She was exclusively breastfed for a long time as she would not TOUCH solid foods for a long time. She gagged on everything until she was 11 months old and even then was 75-95% breastfed until she was about 2 because there were so few foods she would eat.

At two years old, she developed a mystery rash which her doctor informed me "looked awfully gluten" so the both of us went gluten-free for two months (we were about 98% gluten-free). The rash cleared up with another treatment (raw chinese herbs) and never came back and no other symptoms cleared up to make us think gluten was an issue for her, so we went back on it.

In my gut, I felt there was a link, though.

Over time her diet has been free of dairy, soy and peanuts, although never at the same time. We had not noticed any difference until recently she had a sample of a soymilk smoothie at the HFS and about 1/2 hour later FREAKED OUT. She was screaming, hitting me in the face, extremely violent, and horrible. We promptly took her off soy and that wee saw some amazing changes. My EXTREMELY picky daughter started wanting to eat all sorts of foods. She shared an artichoke with me (she never eats vegetables), she ate steak (she will not TOUCH meat outside of chicken McNuggets or the occasional hot dog), and wanted to try my hard-boiled egg (this past Easter, she refused to even TOUCH the real eggs during the hunt, literally). Her bm's became solid, too. I didn't smell any foul breath (sometimes smells like dog poop, I swear), Although a week isn't such a long period of time to notice a difference in that.

About a week later, though, my dh fed her some yogurt with corn syrup in it and also "natural flavors" and she had another freak out like the one the week before. A few days later, all the positive changes we'd noticed went away and we were back to square one.

Now she has been soy and dairy-free since then and I am trying hard to cut out all gluten and corn, as well (the only corn she's had this week has been in baking powder in pancakes).

But it's hard. It's so hard, I just don't know how much longer we can do this. I am trying to try new gluten-free recipes, but she's not liking them. Seriously, she is SUCH a picky eater, and I've taken away nearly all the foods she will eat so now we are down to peanut butter (which she will eat on rice cakes, or pancakes), bananas, dried fruits and cashews. She is hungry all the time and we are all miserable. My husband, while supportive of the food allergy theory during her freak-out, is no longer on board. I'm crying nearly every day at the thought of her being hungry and miserable. At the frustration of trying to find something she will eat, and at the anger when she refuses it (or takes the tiniest bite and gags violently b/c it doesn't taste good to her). I keep holding desperately to the memory of those changes in her the first week she was soy-free, but I just don't know how long I can DO this diet.

So my question is... I know often when the offending food is removed, the child starts eating more things. How long does that take with gluten? My friend told me it took about 3 weeks to notice a change in her son, and if I have to wait that long I fear she will be malnutritioned.

They say you should never make mealtimes a battle with your children but that's what it's always been here, and it's worse now. I do my best to keep it calm, but it's so HARD. Another fear I have is that all these crazy diets will haev a negative impact on her. Will she have eating disorders because I am constantly changing her eating requirements?

Please, give me some advice. I just don't know what I should do.

Thank you,

Bonnie

[Smunkeemom]

But it's hard. It's so hard, I just don't know how much longer we can do this. I am trying to try new gluten-free recipes, but she's not liking them. Seriously, she is SUCH a picky eater, and I've taken away nearly all the foods she will eat so now we are down to peanut butter (which she will eat on rice cakes, or pancakes), bananas, dried fruits and cashews. She is hungry all the time and we are all miserable. My husband, while supportive of the food allergy theory during her freak-out, is no longer on board. I'm crying nearly every day at the thought of her being hungry and miserable. At the frustration of trying to find something she will eat, and at the anger when she refuses it (or takes the tiniest bite and gags violently b/c it doesn't taste good to her). I keep holding desperately to the memory of those changes in her the first week she was soy-free, but I just don't know how long I can DO this diet.

So my question is... I know often when the offending food is removed, the child starts eating more things. How long does that take with gluten? My friend told me it took about 3 weeks to notice a change in her son, and if I have to wait that long I fear she will be malnutritioned.

They say you should never make mealtimes a battle with your children but that's what it's always been here, and it's worse now. I do my best to keep it calm, but it's so HARD. Another fear I have is that all these crazy diets will haev a negative impact on her. Will she have eating disorders because I am constantly changing her eating requirements?

Please, give me some advice. I just don't know what I should do.

Thank you,

Bonnie

I am sorry that you have had such a battle trying to figure out what's going on with her. Meat and most veggies (not corn) and fruit are okay for her, so you all eat that for a while, if hubby or you wants something else, do it away from the house when she isn't around. It won't seem like a weird diet if you all are on it, and it's not going to do anything bad to you guys if you skip some bread with your dinner.

While it's not great to make "dinner a battle" you can enforce the diet without doing that, say "this is what we are having for dinner, and that's all I fixed" and let her eat it or not. Don't bargain "one more bite" or make her feel like she is doing something huge by not eating what makes her sick "I know you don't like turkey, but chicken nuggets will make you sick"

If you can find safe alternatives to the food she likes, then try those out, but not from a "I know you can't have chicken nuggets, but here are some I made that are gluten free" but more of a "look I made chicken nuggets, I like them, do you want to try one?"

sorry about the rest, this is all I think I might be able to help with.

[taweavmo3]

Feel free to rant here all you want, this is definately a good place to do it!

Cutting out all of those things at once would be too much for me to handle honestly. Do you have a plan, such as following a rotation diet and then bringing back in one food at a time to test for a reaction? If you at least had a set time limit that you knew you had to cut out all those foods for, it would make it easier to deal with. I know several other parents on here have done rotation diets, and could give you some guidance there.

Otherwise, if it were me (and this is just me!) I would start with cutting out gluten. That was the hardest transition for us. My daughter is now casein free too, which wasn't too hard since alot of our gluten free mixes and breads were already CF. I just don't buy cheese or yogurt anymore, and she forgot about it really. For milk, I buy Vances Dari Free, or Almond Breeze vanilla and chocolate. I like Vance's to make mashed potatoes and to cook with in general, and the Almond Breeze is good to drink. But both of these are expensive, so I limit our milk use.

Once you get gluten free down, you can work on the rest. I know that desperate feeling to have a happy child again, but you also don't want to overwhelm yourself so much that you give up on the whole thing.

Another lifesaver is just sticking with very simple meals. Once I threw away my cookbooks and just stuck to the basics, things got much easier. Dinner now is hamburger patties (with minced carrots and spinach, mixed with an egg) with brown rice and veggies. We also eat alot of roasted chicken, pot roast, spaghetti, and meatballs. Meatballs are great, b/c you can hide veggies in them, and the kids think they are fun.

OH, and I found the coolest little trays at Walmart. They look like lunch trays from school, and they were only $1 a piece! Pottery Barn Kids had similar trays for $9 each, so I was thrilled to see these. My kids will eat anything I put on these trays, they think they are awesome. They also love any kind of dip (hummus usually) that I put in their little dipping cups that are similar to what the restaraunts use.

I hope this helps you some! If she loves chicken nuggets, Ian's makes some really good nuggets that are free of the most common allergens. Wellshire Farms makes awesome chicken nuggies too, but not sure if these are corn free as well.

Don't give up! Join more message boards, keep posting here....you will figure out what's wrong, it just takes time!

[zebrabelly]

She's been gluten-free for two months with no changes. I was under the impression that sometimes one food allergy will mask another, hence if she was, say reacting to soy the symptoms might have still been there when I removed the gluten. That's why I thought I had to remove everything at once. Eliminate everything until there is a change (or not) and then introduce things back in one at a time to see what was causing the problem. I have never heard of a rotation diet.

And, I listed all the foods she eats already. You can't get much more simple than peanut butter, pancakes (sometimes), rice cakes, bananas, dried fruit and refried beans (I forgot this one the first time).

I really don't mean to sound snarky, but I feel that way. NOT at all because of YOU, of course ( (hug) ), just the situation itself. I'm SO at the end of my rope.

She's been gluten-free for two months with no changes.

I mean, in the past she's been gluten-free for two months

[zebrabelly]

I am wondering if I should add dairy back in? I really don't think it's an issue for her (not sure why, gut feeling I guess) and it would give us a few more foods to work with....

[TCA]

You said before that y'all were 98% gluten free. I hate to tell you, but 98% isn't gluten free. If my son gets teh tiniest bit of gluten, even through cross contamination, he gets very ill, refuses to eat, and D, and sleeps a lot. has she had any testing done by an allergist or a GI? It might be worth getting her tested for allergies rather than being so stressed. I'm in a similar situation now and I vent here all the time. We're used to it!

My son was soooooo picky before being gluten-free. He's still pretty bad, but improving all the time. If there is one thing this disease has taught me, it's to follow my gut. When I read over your message it sounds like your gut is saying to go gluten-free and try it. Just remember it HAS to be 100%!!! If you need help, we're here!

[maggee]

Sorry to hear about your struggles. My now 7yo went thru something similar. He had multple (changing!) food allergies and eventually got very ill (no food or water would stay for 3 weeks). That is when we finally got diagnosis. I have some suggestions for introducing food but you should get your Ped / Allergist to help with some testing (although Celiac testing will require that your child go back on gluten for a period or the test will not be reliable).

My ds is also a picky eater what we have done:

- find kid-friendly foods similar to favorites (i.e. IANS makes a gluten free soy-free dairy-free chicken nugget, there are Gluten-free turkey hot dogs, etc.) some of these are out of his diet now but it helped with the transition

- fresh fruits were also good for a transition (I would prepare and leave on the table - eventually he would get hungry enough to try) Slice into neat shapes

- you mentioned a friend, we had a celiac friend prepare her special food when we visited (our children were friends) and that was all there was to eat. My son raved over hummus (something he never tried before) and I "got the receipe" and made it at home. I called my friend regularly for "new recipies" and sometimes it worked!

- he had severe reactions to foods since he was 1yo and I needed to sometimes remind him that he needed to eat (or try) a food so he would not get a sick belly

I hope some of this helps. At the very least you have my sympathy and encouragement. I read once (Dr Sears? I think) that picky eaters have always survived somehow even if they only ate one food - this gave me hope (plus I recall I only ate PB&J sandwiches in high school Breakfast / Lunch / and Dinner!)

Good Luck.

[dog lover]

I have a friend who has a son that is on an extremely limited diet.

He has yeast overgrowth which has been caused by being on antibiotics, damages

the intestine, causes leaky gut, which can then make the child react to gluten, casien,soy etc etc, whatever

is getting through the intestine wall. I have seen this myself as I watch the child sometimes. If he eats

any of these items he will become "a little monster".

It got so bad before he was diagnosed there was a label of PDD with fears

he'd end up being diagnosed with Autism or Aspergers. There has been a

drastic change in his behavior and intellect after being on this strict diet.

McDonalds french fries are now off his safe list after the soy allergy was found.

I'd get you child throughly checked for food allergies and send in a stool sample for yeast overgrowth to the Great Plains laboratory. They have a web site. I have been made into a true believer after watching what has happened to this little boys life. It's a great deal of work on her part but oh so worth it.

Good luck to you!!!

[Guest Robbin]

Hi and welcome to the board. Your daughter sounds a lot like my youngest (now 13) I nursed him for 2 1/2 yrs and it seemed every food he ate caused some kind of rash or stomach problem. We avoided dairy, soy, and nuts because they were the worst reactions and then other things started bothering him so we went for allergy tests. I would have been pulling my hair out still, if I had not done this and gotten to the bottom of a lot of things. His stomach, etc., calmed down some, and then we both began having the same problems with the same foods (pasta, breads, etc) and that's when I found this board and the whole gluten-free story began. I don't think we could have handled it all at once. I have learned that the proteins like nuts, casein (dairy), soy are common allergy causing foods. Do not go gluten-free until you have her tested because it can cause false negatives on the blood tests. I think I read on another thread that you need to eat the equivalent of three slices of bread a day to have a reliable test. I made the mistake of going gluten-free before the test and had to get tests done by enterolab (enterolab.com). This process of eliminating foods and fights over meals is sooooo frustrating. I would either go to an allergist or do the process of elimination slowly as another post said, with one food at a time over a period of weeks at a time. Something else, too is that she may be lactose intolerant. You might want to try lactose free milk or lactase tablets with dairy products. I hope you get her straightened out soon and have peace at meals! Take care.

[tarnalberry]

if that's literally all she's eating, she's not getting enough macronutrient (or, for that matter, micronutrient) balance. she'd need more protein, for one.

[happygirl]

What is your doctor situation?

[shai76]

When I have a bad allergy attack for a few days later I am in a terrible mood. I feel almost wrathful, so your daughters behavioral changed could very well be from food allergies.

I seriously think with her food adversions she should be seen at Children's Hospital by the gastroenterologist, and possibly taken to the feeding clinic. They can be very helpful.

Do you think she might have reflux disease? It can be made worse even by the mildest food allergies and intolerances. Some kids get heartburn and you might never know it. The symptoms are gulping hard and loud, food adversions, not wanting to eat, or when they do eat gorging themselves, swollowing problems, chest pains...all these can be symptoms. I would look into it as well as the gluten intolerance and allergies. If she has reflux medicine could help her a lot, like prilosec.

[Tony'sMom]

Have you considered speaking to a dietician/nutritionist? I know that I found them to be very helpful when I needed info on 2 seperate specialty diets. They helped me plan and organize so that I wasn't going nuts at every meal.

I hope you can get this figured out soon. Good luck.

[mart]

Sorry you're going though this. I know how stressful it can be, as we went through something similar with my son. After eliminating gluten and seeing a positive change, he got sick again and I eliminated dairy. After a positive change, again he got sick and we eliminated soy. Then he got better and then worse and better and worse and so on. My husband got pretty frustrated with this seeing there was little my picky son could eat. Finally, we did what I consider to be the right thing. We got the Enterolab stool test to tell us what he was intolerant/sensitive to. We already knew about the Celiac, so we didn't put him back on gluten, but we put him back on everything else prior to the testing. This is the only way to really find out. We tried the elmination diet, but I've gotta tell you, it can be really hard for a little one. Plus it's hard to tell, as lots of times the symptoms don't come right after eating the offending foods. I think you will get peace of mind if you just get her tested before making any kind of dietary changes. Good luck. I pray that you'll get your answer soon.

[Guest nini]

I know how difficult this can be... and frustrating... I think the best advice my daughter's pediatrician gave me when she was being such a picky eater, was that children will (usually) not starve themselves and eventually their diet will balance out over the course of a week, maybe not in a day but over a week...

I would suggest keeping a food journal, I don't have a lot of faith in any of the tests... You can get a general idea of food allergies from a food allergy screening, but not all allergies show up in tests. And Celiac isn't an allergy either... so that wouldn't show up in allergy tests. If you plan on testing her for Celiac, don't take her off gluten yet, but keep in mind the testing isn't as reliable as the medical community would like us to believe... too high an incidence of false negatives. No such thing as a false positive though, so if you did get a positive test result you would know for sure.

If you google Elimination diet or Rotation diet, you should be able to get some info on how to do this properly...

I wish you lots of luck with this and I remember it well how frustrating it all can be. With my daughter it was just gluten, with yours it may be soy, or soy and gluten or something else entirely, keep listening to your mommy instincts, we are usually right on target when it comes to our babies... (they are always babies to me!)

[Nic]

I am also wondering if you have discussed all of these changes with a doctor. Maybe a doctor or a nutritionist can help you to better pin point what foods (if any) are the cause of the problems.