What's Up With My Kid.?

[missy'smom]

My son tested pos.(mildly) to wheat via blood test(2 on a scale of 6) and skin test at the allergists but he dismissed it because he tested more strongly pos. to some grasses or other plant that are botanically related to wheat so the allergist dismissed it as not really a wheat allergy but that he was reacting to wheat because he really had the other plant allergy. He also tested pos. to peanuts, tree nuts, and soy but I don't understand why he didn't recommend eliminating those as well.

We're finally going to do a gluten-free trial for at least the next two weeks( I know, not long enough for celiac disease) but it should be long enough to see if his exczema clears up(or so the allergist says). I may extend it beyond the two weeks but for now two weeks is easier to get everyone signed up for. His exzema got significantly better when I went gluten-free and switched him to a lower gluten diet.

I don't know what to think with my son but we've been struggling with inattention and behavior problems for years and have given it our best but it's down to a gluten-free diet trial or ADHD meds.trial or both(for a kid with one kidney, which(meds) scares me).

[gfpaperdoll]

It sound like your son could be gluten intolerant, those genes come with a lot of other food allergies and neurological issues. Usually when you go gluten-free/DF your other food allergies get better & you are able to eat some of those foods again. Of course if you have an anaphylactic reaction to a food you probably will never be able to eat that food again. But the anaphylactic reaction might lessen & if you had some small accidental exposure it might not kill or be as bad a reaction.

neurological stuff should clear on a gluten-free/DF/soy free diet. Important to give him B12...

also I am sure you know that if you are gluten intolerant you will have to be half dead before any damage will show up on any tests. Although we have an amazingly good results once we are on the gluten-free diet. I do have a friend that is double DQ1 that had a positive biopsy before she tested with Enterolab, & my sister who is also double DQ1 tested positive via blood test before she tested with Enterolab. But both of these women were over the age of 50...

I am curious, why does your son have only one kidney? gluten intolerance will damage other organs even before it starts working on the villi. The kidneys seem to be one of the favorite attack places. My son is 37 & not gluten-free & refuses to go on the diet & he already has kidney damage. A friend of mine's mother and her sisters all have celiac & all have kidney damage...

I hope you find the answers that you are looking for & that your son is better soon.

[Rachel--24]

also I am sure you know that if you are gluten intolerant you will have to be half dead before any damage will show up on any tests.

This is actually not true. Even with Celiac damage can be showing up long before symptoms appear....many people are asymptomatic.

I have DQ1 myself...and I was half dying (at least it felt that way to me) but no damage was showing up. None whatsoever. Although I did test positive with Enterolab it wasnt actually gluten that was causing my problems....hence the lack of diagnosis/visable damage.

I think trying the diet is the best way to determine how much of a role gluten is playing in health problems. It may be only a small contributer....or it may be the answer you're looking for.

Additional food intolerances are a clue that things aren't right within the body. If gluten is the cause for that it should resolve while on the diet....if things dont resolve continue to look into other possibilities.

It sound like your son could be gluten intolerant, those genes come with a lot of other food allergies and neurological issues.

I'm not aware of a link between certain genes and lots of food allergies?? Nearly the entire population carries either Celiac or gluten intolerance genes (according to Enterolab)....I dont see a correlation between these genes and food allergies. The majority of people carry these genes and do not suffer multiple food allergies.

[missy'smom]

My son was born with only one kidney. They picked it up on ultrasound at the beginning of my last trimester so we knew that he would be born with only one. The other one never formed. Sometimes they form only a little bud, but his was completely missing. His should grow larger to accomodate his body's needs but we do need to keep it in good health.

I posted because I need a listening ear. Thanks. It was so clear to me that I needed to be gluten-free, I was so sick and could check off so many symptoms on the list and my resonse to the diet was unmistakable, even when I was still learning and making mistakes, but it is harder for me to make sense of what's going on with my son. I feel a bit stupid for having lived with this and learning about it everyday for nearly two years. I feel like it should be so clear to me what's wrong. But with me, I didn't completely figure it out by myself. I had a chance encounter with a Dr. who pointed me in the right direction. In the 8 years prior to that while I was sick I kept mentioning things to Dr. s and getting dismissed and trying to find answers myself and didn't get anywhere, I guess I felt a bit like I do now with my son. All the Dr.s I ask about my son, just shrug the shoulders and say "I don't know" and "He'll be fine" and "he has ADHD". I don't buy that. I want to know exactly what's causing his body to respond this way. So I keep looking for answers, as my health permits. I may not find the answers but I have to keep trying as best as I am able. And I pray that I'll be able to understand and recognize them if they should present themselves.

Thanks again for listening. I just need to talk it out once in a while.

I also posted because I'm open to new insights/info.

[rick-spiff]

Speaking from experience, our son has ADHD & ODD. We tried several meds and he was on them for about a year. We had to take him off due to a seizure, (not sure what caused it) then we found out (tested for allergies and did EEG &MRI) that he is allergic to dairy, gluten, and many other foods.

After changing his diet, we feel that he doesn't need meds. His mood is better off the meds and things are more positive.

There is a cookbook that shows that gluten free diet is very good for ADHD and Autism.

Please find out all food allergens with a blood test, change diet, before you go to meds!!!

PM me if you'd like to talk further.

[missy'smom]

PM me if you'd like to talk further.

THank you for the support. I may do that in time. We're eliminating only gluten for now and then I'll see what's next. Yesterday was our first day completely gluten-free and I sent in snacks because they are having snack time at the end of the day due to standardized testing. But after school he had the first meeting of an afterschool activity so I hadn't had a chance to tell the leader, although I did write it on the sign-up sheet. So, my son ate "a few bites" of an oatmeal cookie. He knows that that had gluten. I don't know if he truely forgot or cheated. I did have a chance to see the leader when I picked him up and mentioned it to him so hopefully it won't happen again. He seems to think that since he gets to pick out and have special snacks, including some things I don't normally buy like M&M's and Skittles, that he can have lots more than usual. I sent about 3 days worth yesterday and he ate them all!

[Juliebove]

What kind of blood test was it? If it was the RAST test, there are different numbers for each food. It is more than a matter of testing positive.

[missy'smom]

What kind of blood test was it? If it was the RAST test, there are different numbers for each food. It is more than a matter of testing positive.

For the blood test there was a scale of 0-6. Wheat was a 2 for him, if I remember right. There were only about 10 allergens in the panel and it didn't include all the foods, some were molds, cats, other environmental and soy, nuts, wheat and others. The Dr. didn't say what the name of the test was and I didn't notice it on the copy of the results. I hate having to drag every little bit of info out of them and double check to make sure they're doing things right! Arrrgg. It seems that others here have had tests done that include alot more foods than he has been tested for. At some point I may have to find out about that. Baby steps for us. I still run out of gas easily and don't process or remember things well sometimes. I still have quite a few Dr. appointments and tests for myself that I should get done and haven't for various reasons. But certain things I have to get done before school ends so they come first. Sorry to vent. My lack of energy and mental clarity lately is driving me crazy. I was doing really well for a while, but with starting up this whole process with him again, I'm just not functioning well. At least part of it is depression that has been triggered again by this( I thought that I was immune to it now that I haven't had any problem since going gluten-free, unless I'm glutened, but I got a wake up call recently that it can still come back and that gluten isn't the only cause for me) and I have suspected for a while that I may have other lingering health problems as well. In light of that, I'm taking a break from it and appointments with professionals for the next couple of weeks, except the gluten-free diet trial, to try and get myself back in better mental and physical health. I need time to process what has happened thus far and regroup and plan out what steps to take next.

[rick-spiff]

I wonder if the stress is making you feel like you've got the brain fog.

as for tests we had a strick food one that had dairy, nuts, all grains plus gluten and gladin, eggs, fruits and veggies, soy, etc thay were tested for alot of foods!!

It sounds like your dr. isn't being real cooperative. Talk to him and see if you can get the situation better or find another dr.

Especially with the ADHD the kids will go crazy when you give them sugar!! My son would have ate them all too!! Would he eat fruit leathers??

It's very hard at first but worth it!!!

[missy'smom]

Well, he's been gluten-free for the past 2+ weeks and has only 2 more weeks of school so we'll just keep going 'till then. I think I need to make some kind of change then. I had hoped we'd see something to show us that we're on the right track but not thus far. He's had at least 1 (small)thing every week that was not gluten-free or questionable that someone else gave him. His eczema hasn't gone away and is unchanged. His behavior was worse! But the kids in school have been getting on his nerves so we had a talk with the teacher and hopefully solved that problem so that he can have a more positive outlook and be more motivated. I'm thinking that once school is out I'll approach this from a different angle and try an elimination diet. Go to a very simple diet, rice, veg. fruit meat, until eczema clears up and then reintroduce things until we see what triggers it again or what other reactions he has. I don't have a plan as to any particular diet,unless anyone has a suggestion, just clean unprocessed foods and free of the all the allergens that he has tested pos. for. So far we haven't eliminated peanuts, tree nuts and soy, which he tested pos. for.

[Lizz7711]

The elimination diet is a good idea..he most likely has issues with dairy and soy which can also cause eczema.

I'd steer way clear of things like m&m's and skittles because of all the food colorings. My daughter who is 8, has major behavioral reactions to gluten, MSG, aspartame, and food dyes, especially red#40 and yellow #5. I was ready to get a shrink for ODD, but now that she's been gluten and dairy and soy, and mostly all food additives free for 5 months, she is a different person. And now it is abundantly clear when she gets gluten or has candy with dyes in it, as within a couple hours she metamorphoses into an alternate daughter She herself is really starting to make the connections as well, so even though she doens't have the physical reactions, the mental ones of feeling like she's going crazy, being so irritable, are enough to help her make the right food choices for herself. I've bought some organic gummy bears and worms at Whole Foods that use natural colors from vegetables, as well as m&m's from there that also use natural colors and we make special gluten-free cookies and rice crispie treats and other things so that she still feels like she's getting her sweet fix, but without the poisonous chemicals. (oh, by the way, the reason I think kids with celiac disease seems to have problems with the food dyes etc also is becuase of the leaky gut cauased by the intestinal damage...so the molecules of these chemicals are getting into the blood stream and to the brain).

If you haven't done enterolab testing yet, that might be a good route too as it just saves the whole hassle of the elimination diet, if you have the money. It's also good to get the gene test there and the malabsorption as well. And they also test for casein in that package.

good luck!

Liz

[Cheri A]

((hugs))

You know, if he has environmental allergies, that can really trigger the eczema also. My dd has multiple food allergies, environmental allergies, and ezcema. She is really struggling right now with the eczema and food is not the issue.

[missy'smom]

Thanks Liz.

I'm generally good about providing "healthy snacks" and this was probably the one time this year that I actually purchased candy for him and one that had all the junk in it as well. I never buy that stuff. Don't buy things that contain high fructose corn syrup or artificial sweeteners. But he comes home from school nearly everyday with candy. If the school doesn't give it to him, the kids do. I would love to stop it.

I've been seriously considering Enterolab lately too.

[missy'smom]

((hugs))

You know, if he has environmental allergies, that can really trigger the eczema also. My dd has multiple food allergies, environmental allergies, and ezcema. She is really struggling right now with the eczema and food is not the issue.

This is the first time time that I've heard that. I did know that it can be caused by contact but not by environmental. He's highly reactive to the environmental. On Zyrtec(constantly) and Nasonex(as needed). Haven't started allery shots yet, maybe summer. The allergist said it would help keep him from developing azma, which he doesn't show any signs of yet.

[Ursa Major]

This is the first time time that I've heard that. I did know that it can be caused by contact but not by environmental. He's highly reactive to the environmental. On Zyrtec(constantly) and Nasonex(as needed). Haven't started allery shots yet, maybe summer. The allergist said it would help keep him from developing azma, which he doesn't show any signs of yet.

I have never heard that allergy shots will prevent people from developing asthma. This allergist seems to believe that everybody with environmental allergies will develop asthma unless they get his expensive allergy shots! Personally, I would question his motives in his recommendations.

I start wheezing when I eat rice, eggs and gluten. Those foods somehow get me to react to environmental triggers that are not a problem when I eat only things that I don't react to.

This far I have found that eczema is mostly caused by food allergies/intolerances. You remove the offending foods, and the eczema clears up.

That was true for myself, my youngest daughter and all of my grandchildren. And two of my granddaughters had severe eczema, both were covered from head to toe with scaly, itchy eczema. It was so itchy that they couldn't stop scratching and ended up with bloody, weeping sores that would never heal.

When my daughter eliminated the foods they are intolerant to (with one it was mainly dairy and gluten, the other it was dairy, soy, gluten and nightshade foods), their eczema cleared up completely and they both now have gorgeous skin.

[AliB]

Well, he's been gluten-free for the past 2+ weeks and has only 2 more weeks of school so we'll just keep going 'till then. I think I need to make some kind of change then. I had hoped we'd see something to show us that we're on the right track but not thus far. He's had at least 1 (small)thing every week that was not gluten-free or questionable that someone else gave him. His eczema hasn't gone away and is unchanged. His behavior was worse! But the kids in school have been getting on his nerves so we had a talk with the teacher and hopefully solved that problem so that he can have a more positive outlook and be more motivated. I'm thinking that once school is out I'll approach this from a different angle and try an elimination diet. Go to a very simple diet, rice, veg. fruit meat, until eczema clears up and then reintroduce things until we see what triggers it again or what other reactions he has. I don't have a plan as to any particular diet,unless anyone has a suggestion, just clean unprocessed foods and free of the all the allergens that he has tested pos. for. So far we haven't eliminated peanuts, tree nuts and soy, which he tested pos. for.

Have a look at the Pecanbread website. It is a great resource for both adults and kids with gluten and other issues. It covers the Specific Carbohydrate Diet which is being used with great success helping kids with things like ADD and ASD (the SCD is also a success for a lot with stomach and bowel problems and has improved all sorts of health issues, even stuff like Schizophrenia! Well it makes sense - if gluten can affect children's mental ability then it sure can affect adults too!).

Pecanbread is a good place to start on an elimination diet and there are loads of recipes and lots of information including a page with cartoony drawings illustrating what happens to the villi which is great to sit down and look at with your child.

[missy'smom]

Thanks AliB. I did look up SCD a few month ago and it makes alot of sense but it also seemed a little overwhelming and more than I could handle at the time. I don't recall if it was Pecanbread so I will look at it again. I'm really struggling to keep myself going(fatigue) sometimes these days and feel like I have more challenges than I can handle. It's hard balancing his needs/challenges and mine. Spent yesterday in the ER myself and came home to find out that my son told the kids in his class that he was going to kill himself with a crayon or by eating crayons. Been talking like that lately and we all suspect that there is a manipulative element but he is also very frustrated with alot of things and needs help with learning some coping skills.

I do appreciate everyone sharing their experience and advice. Even if it's over and over again. Sometimes it takes a while to sink in.

[adhdwarrior]

My son has been Gluten-free Casein-free and egg free for almost 3 weeks now and I am utterly amazed!

He had been diagnosed "profoundly" ADHD and his psychiatrist was beginning to lean toward Asperger's or even High-functioning Autism.... not so now! My son no longer shows any symptoms of ADHD! He also doesn't suffer with tummy troubles like he used to!

One day last week, he was particularly hyper and we linked it to a red gatorade he had been given by his coach (Red #40).

Another day, he had to come home from school vomitting b/c he had been "cross contaminated".... other than those 2 incidents...he is perfectly healthy and happy. He hated the diet at first and put up major resistance..but even he knows how much better he feels now! He commented just this week that he "remembers things" better since he has been eating "right"..... he is even accepting his new diet now b/c he knows how yucky he feels when he eats the wrong stuff.

He gets "good notes" home from school for a pleasant change... his schoolwork has improved dramatically!

God, I wish we had done all this years ago! But I am glad we are doing it now. I am even considering going Gluten-free Casein-free myself ( maybe even my toddler, too, since he is "just like" his brother was at his age !)

[Cheri A]

My son tested pos.(mildly) to wheat via blood test(2 on a scale of 6) and skin test at the allergists but he dismissed it because he tested more strongly pos. to some grasses or other plant that are botanically related to wheat so the allergist dismissed it as not really a wheat allergy but that he was reacting to wheat because he really had the other plant allergy. He also tested pos. to peanuts, tree nuts, and soy but I don't understand why he didn't recommend eliminating those as well.

I don't understand why the allergist wouldn't have you remove all of those food items either, especially peanuts! Carleigh is allergic to wheat also, a 2 on the scale. That ended up being the final piece of our puzzle to get her on the way to being healthy. But, we had already eliminated all of the other foods on our list. Her celiac testing came back inconclusive. She is gluten-free.

This is the first time time that I've heard that. I did know that it can be caused by contact but not by environmental. He's highly reactive to the environmental. On Zyrtec(constantly) and Nasonex(as needed). Haven't started allery shots yet, maybe summer. The allergist said it would help keep him from developing azma, which he doesn't show any signs of yet.

I am with Ursa on the allergy shots. I'm not sure why the allergist would have you do those, but not avoid all the positive foods on the allergy test, especially on the basis of he "might" develop asthma. You know, not all antihistimines are created equal, either. My dd was on Zyrtec for a long time, and it didn't work for her. We changed the antihistimine and it was much better.

Welcome, ADHD warrior!

[AliB]

My son was the opposite, with ADD. His teacher always said that Steve would be sent to do a job, find 10 other things to do on the way and then have forgotten what he went for!

Poor kid. His biggest problem was, and still is brain-fog and I wouldn't be remotely surprised if he has Celiac or at the very least extreme GI.

I am the same. I never seem to be able to focus on one thing - I always put it down to my personality, and quite likely it partly is, but I am sure that gluten has played a big part in it. It's not so much 'fog' with me but an extreme lack of motivation (unless it's something I like doing!!!). I'm sure the gluten 'plays' on certain personality weaknesses and exacerbates them!

[missy'smom]

I'm glad that there have been so many of us on here talking about ADHD. It's so little understood,even by the professionals. Unfortunately, it's up to us to figure it out.

Yes, welcome adhdwarrior. I hope you saw my response to your questions about baking, I think it was. I'm glad that you're seeing such good results.

Cheri A, Thanks for your response. I don't plan to do the shots at this point. Along with other reasons, he's had a rough time lately and several shots a week is not going to do anything to improve his outlook on life!

I do want to eliminate the other food allergens that he tested pos. to. I'm glad we have all the nice produce available in the summer and time to bake/make special treats together using pure ingredients.

[tipnpat]

This is such a wonderful place to come and read and realize you're not alone. I tried to experiment with just taking gluten out of my son's diet because he was so obviously headed down a disastrous path with behavior, etc. I could see several other diagnoses in addition to ADHD looming. Just the gluten was hard to do because he didn't understand why and school was difficult because he was not "allergic" per se. But, then we did allergy testing (blood, not skin) and removed many other things from his diet. Even to a 10 year old, having a doctor say it was necessary made it easier for him to do than just his Mum saying it! The minute improvement off gluten tripled when we took out dairy, eggs, and soy. Several times I've tried to say I'm sticking mainly to just gluten-free/CF and once I gave him soy. He was irritiable and hyper. The next excursion was a scrambled egg for breakfast and he was sobbing the next day over minor things. So, I guess they do all matter. Hopefully, not always. The integrative medicine doctor I take him to suggested allergy drops. It's a formulation of the allergens just like with the injections, but it is sublingual instead of a shot. Anybody have any experience with this? Would it be worth the money? And then there's the Celiac angle. If he is a Celiac, I shouldn't give him allergy drops that contain gluten. It would be easy to just keep him on the diet because that is what I do but he said when he grows up he isn't going to stay on this diet and it'd be nice to know if he really has Celiac. Our only pediatric GI doc in town, however, is I'm told - dismissive. I guess I'll find out soon when I take my younger son.

[missy'smom]

I hear you. Part of his problem with sticking to the diet is that he doesn't have a Dr. saying he has to. Right now it's just mom. I need to sit down and give him a formal lesson in label reading to give him a little power. He's been trying on his own. He's been around me for 2 years and heard us talk about it alot and is always with me at the grocery store so knows some things but not enough. It's encouraging to hear that so many have seen a big improvement after going beyond gluten and eliminating the other allergens as well. I feel a little sad for him thinking about eliminating soy. Japanese food is part of our family cultural heritage and he loves it.

[Cheri A]

Tipnpat,

The allergist we go to uses the sublingual drops. We drive three hours to see them, after trying all the conventional allergists here to no avail. All they wanted to do was put her on drugs and steroids to make her comfortable. I cannot begin to tell you the difference in the quality of her life now! We did not have behavior issues, she suffered from extreme eczema and was developing some bad GI symptoms. They discovered the wheat allergy, and I asked for celiac testing. She had three of the five markers, but we did not get the official GI diagnosis. On her last visit, her wheat and egg numbers had gone down. They wanted us to challenge them, but we (DH and I) decided not to because of the celiac panel. They were supportive when we called to tell them we would not be challenging wheat. But, you know, I never thought about the drops having the wheat in them! Hmmm!! Well, I'll have to think on that. All I know is that she is healthier now than she has been her whole life. There are not any GI issues going on now at all, that we can see.

[tipnpat]

missy'smom,

I make sushi or jasmine rice and stir-fry it at home with tamari sauce, ginger, and sesame oil. If we go out to eat I ask them to make our stir fry without soy sauce. I don't think they understand me when I ask if their soy sauce is tamari. I want to be safe anyway. My kids still like it that way. And then there's sushi, of course. I think most of the hand rolls are gluten free. Someone correct me if I'm wrong. Sashimi is okay, of course. Clear soup usually has soy sauce in it.

There's always the risk of cross-contamination. My MD recommended an enzyme (DPP IV) in case of accidental exposure. We're going to try it out Friday night (no school the next day) with pizza. The enzyme helps your body break down gluten, casein, soy. I don't know how legit it is and since I know I have an immune response to gluten I'm not going to eat any on purpose. I'm just doing it for my kids until I know if their labs are conclusive or not.

Alot of people make bread substitutes with rice, millet flour, etc. I do once in awhile but mostly we're just adapting to the fact that we don't need flour. I've lost ten pounds simply cutting out all grains and have improved even more. Let's face it, if wheat, barley, and rye hurt us how likely is it that the other grains do as well. They all have a gluten-like protein even if the protein supposedly does not induce an autoimmune response. That's what the SCD diet supports but I too was a little overwhelmed with that diet. So, I just cut out all grains for myself.

One way I got my son to go along with the diet is to play on the fact that he loves to have special attention. I told him that he could join the ranks of all the kids out there who get to say, "I can't have that. I'm allergic." I think he likes being different and the longer out you are from the eliminations the better it becomes or it did for us at least. One downside is that my son still thinks this is temporary. He thinks one day his body will be better and he'll be able to tolerate those things he can't have. For him, I hope he's right. He's got the gene, though so who knows.

tipnpat