Does Any Of This Sound Familiar?

[wonkabar]

Hi! My son turned 3 at the end of March and has been on a gluten-free diet since March 8. He has had problems with his poops since he was a baby ...very soft/wet and pale with an AWFUL odor. He rarely had a formed poop even up until the begining of March. Diaper rash was terrible for him (even as a toddler); his little butt would blister and bleed. His sleeping habits were poor; he'd wake up several times a week in the middle of the night crying/screaming and often didn't fall back to sleep for a couple of hours. (This was tough with a newborn home at the same time!) His behavior started to change, too. Lots of crying and screaming for no apparent reason, irritability and edginess. He's typically a very sweet, loving and happy little guy! He has eczema, minor wheezing episodes, and an allergy to egg whites and tomatos. One night last summer we were watching Keith Olberman on MSNBC and heard him talk about celiac disease. We had never heard of it and checked out the website. I was blown away when I read the info---specifically the symptoms. All I could say to my husband was, "My God, this sounds like Zachary!!" That was the beginning of "the mission" We went to a Ped GI who immediately dismissed us when we indicated that with a change of diet (at the recommendation of a friend we had him on a Gluten-free Casein-free at that time) we saw a MAJOR change in his poops, behavior and development. (He was a 32 week preemie.) He said the change in behavior and development was "purely coincidental" There was never an issue with malabsorption or failure to thrive, vomitting, anemia, etc. That certainly made it easier for the GI to say he was "just fine". Haven't gone back to see him! We put him back on a regular diet to see what would happen and sure enough, there was a change for the worse in his GI issues and behavior again! We still had no idea what was going on although I had mother's intuition which is not a force to be reckoned with!!

He was allergy tested again in February. No allergy to milk (we thought that was possibly the culprit) or wheat. At this point, the ONLY thing we hadn't tried from a dietary standpoint was just eliminating gluten from his diet. Low and behold his poops started to change (now they're solid and only once a day!!), he started sleeping much better and is FAR less irritable. (He's 3 so he does have his moments! ) He has no problems with dairy. His bloodwork (drawn on March 7) came back negative, and we're not willing to put him through a biopsy at this age. He seems to be extremely sensitive to gluten in that the smallest amount results in a change in his poop and behavior. We're hoping as he gets older he can tell us how he feels rather than just cry or scream. Following the diet hasn't been that bad at all. We've done lots of research and are dilligent about reading labels and making phone calls. If we go out we just order him a plain cheeseburger and fries from a clean pan.

We were not stopping until we figured out what was wrong with our little guy and can't tell you how relieved we are that we figured this out sooner than later, albeit without any medical help!! Any input or comments would be greatly appreciated. Sorry this is so long!

--Kristy

[Fiddle-Faddle]

Hi, Wonkbar, welcome to the forum!

How is your son's ability to communicate verbally? Can he ask and answer simple questions? Can he tell you when his tummy is hurting? Does he ever ask "why" questions (such as, "Mommy, why do I feel so yucky?")? If you point at something across the room, can he follow that with his eyes and spy what you are pointing at, without your having to give him verbal clues ("it's over the fireplace and under the clock")?

[wonkabar]

Hi, Wonkbar, welcome to the forum!

How is your son's ability to communicate verbally? Can he ask and answer simple questions? Can he tell you when his tummy is hurting? Does he ever ask "why" questions (such as, "Mommy, why do I feel so yucky?")? If you point at something across the room, can he follow that with his eyes and spy what you are pointing at, without your having to give him verbal clues ("it's over the fireplace and under the clock")?

Hi! Yes, Zachary has verbal skills. We've had him evaluated (I taught self-contained special ed. before I stayed home!) and he was diagnosed with mild sensory modulation dysfunction and a speech delay both of which have improved greatly with therapy. He's not on the Spectrum. I hope I didn't make it sound like all he did to communicate was cry and scream! He's got a lot to say!! All of this is a result of his prematurity; he was a 32 week preemie. His greatest area of weakness is processing; he just started preschool and is doing great. He's a smart little cookie. I believe the yelling was a result of feeling awful but not having the language needed to articulate that. We honestly don't know what exactly hurt him considering it could've been so many different things related to gluten. This forum has been so informative and helpful.

--Kristy

[Fiddle-Faddle]

Hi, Kristy,

Oh, good, it sounds like you're really on top of things! Most parents (and even pediatricians) probably wouldn't have known to get an eval. My first son was 4 1/2 pounds (37-weeks) and his pediatrician (whom we otherwise adore) missed a lot of red flags, such as not being able to point or follow someone else's pointing--our son's high verbal ability confused a lot of the evaluators!

What is "self-contained special ed?"

[wonkabar]

Hiya! I thank God everyday for my background. Zachary's developmental milestones were all delayed with the exception of social/emotional and cognitive ability. He was 4 lbs. at 32 weeks. Although they were delayed, he did ultimately achieve them. So many parents and doctors miss the red flags. There needs to be more awareness of the Spectrum Disorders. Thanks for your gentle way of throwing out those questions! How is your little one doing?

Self-contained special education is what you'd see in an IEP as the LLD Class (Learning and/or Language Delayed). The kids in my class were the most significantly involved (cognitively) in the building. Most of my my little guys were with me for all major content areas, and had a variety of disabilities, but participated in specials, lunch and parties with their mainstreamed peers. I absolutely loved it!

I'm not usually into self-diagnosis, but my son fits the bill for,at least ,a gluten-intolerance/sensitivity. His preschool has been just great about it. Any thoughts?

--Kristy

[Fiddle-Faddle]

Sounds like you already have the answer--he has changed poops and changed behavior on gluten. Whether it's celiac or some other kind of wheat or gluten issue is unclear, but rather beside the point. It sounds like you have fantastic instincts and much better powers of observation than your doctor. With your background, you may have even staved off some kind of ASD!

My oldest is nearly 11 now, and doing so well. He had open-heart surgery at 2, which set off a bunch of major develpmental regressions (aside from the original red flags), but I had a lot of trouble convincing anyone to listen to me. You know what medical professionals tend to think of mothers...Anyway, we did eventually get help, and when I didn't like the way ABA fit (or didn't) with him,I pulled him out and had him do Tae Kwon Do, violin lessons, and drama, which worked wonders.

He reacted to milk right when we first tried it at one year, so we did soy milk instead. He had wheat issues (I think) at 5, and we went casein and gluten-free for several months, and then gradually eased them back into his diet with no effect that we could see. I'm the one with gluten issues now!

Kids with these issues (preemies, learning delays, food allergies, intestinal issues, and ASD, etc) may very well be much more sensitive to vaccines than other kids. Did you know that you don't have to have EVERY vaccine they come out with, and that you can spread out the ones you do choose to get so that he doesn't get more than one shot at a time? (Doctors don't like to tell mothers this--some of them even refuse to accept your child as a patient unless you promise to get every shot the pharmaceutical industry comes up with .)

If you do a search on this site, there's a thread somewhere or other about vaccines.

[wonkabar]

Sounds like you already have the answer--he has changed poops and changed behavior on gluten. Whether it's celiac or some other kind of wheat or gluten issue is unclear, but rather beside the point. It sounds like you have fantastic instincts and much better powers of observation than your doctor. With your background, you may have even staved off some kind of ASD!

My oldest is nearly 11 now, and doing so well. He had open-heart surgery at 2, which set off a bunch of major develpmental regressions (aside from the original red flags), but I had a lot of trouble convincing anyone to listen to me. You know what medical professionals tend to think of mothers...Anyway, we did eventually get help, and when I didn't like the way ABA fit (or didn't) with him,I pulled him out and had him do Tae Kwon Do, violin lessons, and drama, which worked wonders.

He reacted to milk right when we first tried it at one year, so we did soy milk instead. He had wheat issues (I think) at 5, and we went casein and gluten-free for several months, and then gradually eased them back into his diet with no effect that we could see. I'm the one with gluten issues now!

Kids with these issues (preemies, learning delays, food allergies, intestinal issues, and ASD, etc) may very well be much more sensitive to vaccines than other kids. Did you know that you don't have to have EVERY vaccine they come out with, and that you can spread out the ones you do choose to get so that he doesn't get more than one shot at a time? (Doctors don't like to tell mothers this--some of them even refuse to accept your child as a patient unless you promise to get every shot the pharmaceutical industry comes up with .)

If you do a search on this site, there's a thread somewhere or other about vaccines.

Hi! My pediatrician has been very supportive of the gluten-free diet. His spin on it is if it works and there's a clear change then go with it. He's also of the thought that just because his bloodwork is negative now doesn't mean it won't be in a few years. As far as instincts go...maternal instinct and a special ed background is a tough one for the docs to fight against! And regarding ASD, we've taken my son to the Eden Institute in Princeton, NJ which is a premier private school for Autistic children. He was there at 2, 2 1/2 and will be there again in a couple of months. We weren't leaving any stone unturned and are continuing the f/u evals through preschool. It is their feeling that he's absolutely not on the Spectrum, but rather a preemie with processing delays who needs that extra boost to help him catch up. I'm glad to hear your son is doing so well.

--Kristy

PS-how do you cut and paste a quote???

[wonkabar]

Hi! I posted about my son's gluten issues, and I went on a major tangent about developmental stuff! Sorry! Has anyone had similar experiences with their kids at this age? My original posting is from today and is titled"Does any of this sound familiar?" Any input or comments would be greatly appreciated.

--Kristy

PS- I forgot to mention that the ped GI told me he wasn't at all concerned about the color or odor of my son's poop. For any of you who have had the misfortune of your kids getting Rotovirus, that's what it typically smelled like. Yet, he wasn't concerned about that!

[Fiddle-Faddle]

Sorry, Kristy, the tangent was my fault!

Yes, it sounds familiar--when Michael had green foamy diarrhea when starting milk, one pediatrician said it didn't matter. But when we switched to soy milk, he had perfect poops again, so I never went back to that pediatrician.

The pediatrician we like shrugged off my kids' occasional stomach-aches, and did what he could to help the severe eczema that one had, but never suggested gluten as a cause of either. But when I told him about my possibly having celiac (actually, when I said that my IgG was off chart, he said, "Yup, then you've got celiac"), and that having my family go "gluten-lite" while I went gluten -free resulted in Danny's eczema completely disappearing, as did the stomach-aches, he said, "You're obviously on to something here--don't change it, and keep your eyes on it!"

Poops and behavior DO matter; if your ped GI dismisses what you see (and know in your gut--no pun intended!), then I don't htink much of the Ped GI. Healthy kids do not have unhealthy poops. Food allergies and intolerances most definitely have an effect on behavior. Does he expect you to ignore this, or does he think you are making it up? Why is he dismissing you like that?

Okay, everybody, I feel like I'm monopolizing this thread here--will somebody else please put their two cents in here?!

PS-how do you cut and paste a quote???

Sorry, Kristy, I missed this one somehow. Hit the "reply" button like you did, and then highlight anything you want to delete and hit your backspace button!

I wish I'd had your level of knowledge when my oldest was tiny!

[wonkabar]

No apology necessary! I really appreciate you responding; I honestly thought I'd hear from more people!! I was irrate when we left the GI's office. We haven't been there since. My ped has been amazingly supportive. I was shocked by this ped. GI's attitude. He's definitely of the school that food and behavior have nothing to do with eachother...I knew better. My 6 month old daughter was having solid bm's and my 2 year old wasn't! I addressed this with him and could not believe that he wasn't concerned about it.

--Kristy

[Fiddle-Faddle]

TCA has had some interesting issues--try looking her up on this board. Her baby daughter has had a lot of heart issues (surgery twice, I think)as well as gluten problems--she had to fight the big important doctors, too, but she convinced 'em!

Come to think of it, I haven't seen her post in a while--I hope everything is okay.

[JakeARoosMommy]

I read your post and felt like I was reading the story of my 21 month old son Jacob. My son's behavior and physical sxs have done a complete turn around. He still has soft stool, but he certainly doesn't have the blistering rashes that he used to have. He is no longer irriatable, but very happy and smiling most of the time. :)Something to tell any GI or doctor that doesn't think that poops affect behavior, "If your butt burned whenever you pooped and you had a constant tummy ache with food, don't you think you would be cranky?"

As for the vaccines, I have held off for the time being. He is one round behind. When they (medical people) inquire as to why he is behind on his immunizations, I simply say, "He hasn't been healthy for awhile. I don't see a point in giving a sick child a set of immunizations, do you?"

[TCA]

Here I am Fiddle-Faddle! Thanks for your concern. It's just been one of those weeks. My best friend got married this weekend so I was busy doing bridesmaid stuff and still trying to pump and all that other fun stuff for my daughter. Exhausting. We also had to go to Nashville today for her to see an endocrinologist. They're now concerned about growth hormones, so it's just been a busy week.

Anyway, back to the question at hand - Your son sounds a lot like mine. He had 2 negative biopsie though before I had the good sense to say enough! Our Ped. GI is great and he was still clueless. He listens to me, though and I think he's learned a lot from my kids. He sees the improvement in my son and can't argue with that - no D, he's happy, and growth (averaging about an inch and a pound a month so far). He had the stinky D, failure to thrive, irritability, bleeding diaper rash, walking and speech delays (your son's may not all be due to being a premie), tooth enamel defects, etc. He also had inconclusive bloodwork. I finally just put him on the diet and the change was amazing. He had never told me he was uncomfortable, but after a few weeks on the diet he just said out of the blue, "My tummy doens't hurt anymore, Mommy." I was floored. I almost wanted to cry out of joy that he could express that to me.

My daughter wasn't as easy, even though my son was horribly difficult in his own way to diagnose. She had open heart surgery last april and will have another in Aug. Her main problem is that everyone wants to blame everything on her heart. One cardiologist told me I just had to accept that heart babies are sick. If I had accepted it, she wouldn't be sick, she would be dead. I'm not saying that to be dramatic, it's just the truth. She has a lot of other issues that I won't go into here, but listen to your gut and forget what the drs. are saying if you see results... In a lot of ways my kids helped to diagnose each other a little at a time.

As for the casien free thing, both my kids had issues with casien, but I went cf and they did fine. (both were/are breastfed). I breastfed my son until 20 mos because of his issues with dairy. with my daughter, on the other hand, I went gluten-free when she was 5 mos. old. After a couple months on the gluten-free diet, she had no problems with dairy at all. I now think the gluten reaction caused the dairy problems since both eat dairy now with no issues.

I took very careful notes of all the events that have happened, especially dietary and weight changes and plotted them. It is so evident to see the actual data of what has helped her. Drs. can't argue with that.

I'm not sure if I've answered all your questions or not since I'm so tired, but I'll check back in tomorrow when I might be able to put sentences together better. Good luck!

[Guest nini]

you ask does this sound familiar? you betcha... my daughter was also a preemie, was also 3 when I put her on the gluten-free diet, I was dx'ed with Celiac when she was 3 and tried to get the Ped. GI to test her for it. They were totally dismissive of me, said that she just had IBS and I needed to feed her more whole wheat. The behavioral issues were out of control, she would get violent and kick and scream and hit and cry for no apparent reason for hours at a time and then lay on the floor sobbing after that she couldn't help it... She is six now and in kindergarten, and absolutely healthy and brilliant if I say so myself! No signs of having been a preemie or having been so sick. Feel free to pm or e-mail me any time with questions about the diet and small children!

[wonkabar]

Thanks for the input! It's truly amazing how food can affect behavior. My son looked like he had chemical burns on his little butt at times. It was just awful...so was the smell! My husband dragged me out of the GI's office before I knocked him out! We were both appalled by how dismissive he was. My ped has been great.; we love him! As I've said, his feeling is that we may not have scientific evidence to show that Zachary has an issue with gluten, but we do have anecdotal evidence and you can't argue that! He also believes that just because Zachary had negative serums now doesn't mean he won't in the future. I'm hoping that the dietary changes now will prevent a positive serum in the future.

Zachary is typically a sweet, loving little boy. He was becoming fresh beyond what was expected of a 3 year old. Although, there are times now when he hits and yells for no apparent reason. Have you noticed a connection between dairy and behavior as well? He has no GI issues with dairy, but I do understand that dairy can also have an adverse affect on kids. He has tons of milk and cheese every day and usually has a yogurt, too. I'm not looking to follow a casein-free diet, but I was wondering if cutting out major amounts of dairy from his diet will show a change. Anyone's thoughts?? Thanks!

Kristy

[Fiddle-Faddle]

I hate to suggest this because of the expense, but it might be worthwhile to switch to organic milk and yogurt. All the things breastfeeding moms are told not to do (nurse while on antibiotics, eat foods with high levels of pesticides, etc), our dairy industry does for us, adding recombinant bovine growth hormone. One of my friends told me that, when her daughter was 9, over half the girls in her class had already started getting monthly periods; many of those that had not were allergic to dairy. Hmmm. Makes me wonder.

[Guest nini]

initially you may want to eliminate dairy, and I definitely concur with going with organic dairy products. Many of us are intolerant to dairy until we begin to heal from the damage, some of us can never tolerate dairy, you just have to monitor him and see how he reacts with or without it.

[wonkabar]

Thanks! I already use as many organic groceries as I can for the kids. If I ate half as healthy as I feed them I'd drop 20 lbs.!! I'm gonna switch over to soy products for a bit to see if that has any affect on him. I agree...although he's not showing any overt GI symptoms, his insides could be reacting to the massive amount of dairy. Typically, how long does it take for the insides to completely heal in the little ones?? Any other diagnostic advice at this point?

--Kristy

[TCA]

We do organic milk, but not cheese. It's a cost issue, but we do what we can. I too have heard that the hormones in milk are spurring early menses in young girls. I was 11 myself and drank milk all the time. I can't imagine my daughter starting any younger. It just makes sense to me. The only way we can get my son to eat yogurt is in the sticks that you freeze. He thinks it's a popsicle that way - whatever works!!!! I haven't been able to find them in organic.

As far as tatrums go, our son will act horrible if he gets accidental gluten. When we first started the diet I made a lot of mistakes and I'm sure I will make more. Are you sure you're 100% gluten free? Sorry to ask, I just know how hard it is at first.

As for the vaccine discussion, we went ahead with all vaccines and haven't seen any issues. We didn't want Megan to have to fight anything unnessasary off with her heart condition. Her shots were delayed, though, and her problems started before the shots.

I'm glad Zachary is doing better and that you followed your instinct. We just have to do that as Moms.

[wonkabar]

Zachary has a completely different temperment when he ingests gluten. We gave him mini quaker rice cakes (apple cinn.) for about a week.............WOW, was it a wild week for all of us. I know some of the behavior is age-appropriate, but it's beyond that and different when gluten is involved.

Don't apologize for asking about being 100% gluten free. We ask ourselves that question all the time.!! We've made mistakes, and I'm sure we'll make more....life as a parent! I do think he's getting it from somewhere or that dairy is aggravating his belly right now. I'm switching him to soy to see how that goes. That will certainly decrease the mega-amounts of dairy he eats. How long can it take for the belly to completely heal? And how long does it take for gluten to leave your system? I know the short answer to these questions is simply "awhile".

--Kristy

[taweavmo3]

Sounds familiar here too. I'm so glad you didn't listen to the Pedi GI and followed your instinct. My daughter has a positive diagnosis, but she had nearly every symtpom in the book by the time we took her to a GI doc. In our case, it was the GI who first listened to my concerns.......she was 3 years old and weighed 20lbs. But since I'm small, no other doctor had taken any of my concerns seriously.

My daughter also has developmental delays, so like Nini said....your son's delays may not be solely based on his prematurity. I have taken care of ex 26 week preemies who are now my daughter's age (4), and are WAY ahead of her in development. It's frustrating to see all the damage that gluten can do. At my daughter's last eval, she was 12-18 months behind in all areas of her development.

At my youngest son's last checkup, I was thrilled to tell the pediatrician how much he's improved since going gluten free (haven't had a positive blood test on him yet). But, I was completely blown off, and he thought it was all a coincidence. I know better. Ben's eczema totally cleared up, dairy no longer gives him any problems at all, and his speech has improved. I felt so deflated when I left......I thought it would be a good learning experience for our Ped., but he shrugged it all off and said he thought Ben would be fine on a regular diet. But he did say that he looked incredibly healthy, so I could keep up the diet if I wanted. (Gee thanks, planned on it anyway!) Maybe one day all these doctors will catch up with us, but until then, I think we are on our own.

OH, and in regards to casein/dairy.....definately try cutting down his intake while initially going gluten free. He may not have shown issues with it before, but after starting the diet, it may start to cause tummy upset as well. I think it took my daughter 6 months before she could tolerate dairy again. After I thought her tummy could tolerate it again (no more loose stools), I let her have a dairy fest. Her bowels weren't affected, but I think her moods were. Her tantrums increasingly got worse, and the only correlation was her increase in dairy intake. She was having loads of milk, yogurt and ice cream. So I tried making her casein free as well, and noticed an improvement in her demeanor in two days. We still have slip ups, especially at grandma's house, but it seems to clear her system pretty fast. I think I read somewhere that casein only takes 3 days to clear the body....so you'll see quick improvements.

Anyway, there's my book of a post! Glad you joined this board, hope to see you around more!

[Fiddle-Faddle]

Ben's eczema totally cleared up, dairy no longer gives him any problems at all, and his speech has improved. Anyway, there's my book of a post! Glad you joined this board, hope to see you around more!

My middle son has eczema and speech problems, too! His eczema totally disappeared when we went "gluten-lite," but I never thought to connect the speech with gluten! He has trouble with t-combinations, ch-combinations and s-combinations, and he's 7 1/2. Do you mind if I ask what speech difficulties your little guy had?

[TCA]

My daughter was diagnosed with eczema today. Another one to add to the list......

Kristy - It took my son about 3 weeks for the D to stop and about a month to start looking healthy. I don't know for sure what the answer is, but those were my observations.

With the developmental delays - my son was almost walking around 9 mos. old, around the time he was introduced to gluten. He just stopped and didn't walk until 16 mos. He is still delayed majorly with his speech, but I see improvement. As far as pointing out exactly what he does wrong, well I pretty much have to be an interpreter for him to the rest of the world. Triangle and popsicle sound identical, for example.

another improvement, he no longer has any symptoms of asthma and he was on nebulizer treatments before. It's really amazing.....

[wonkabar]

I do believe that food effects behavior...low blood sugar/cranky---too much sugar/hyper. The more I read about gluten, the more it amazes me that the medical community doesn't/won't recognize the correlation between gluten and behavior. Who knows, maybe the same issues were there when people started studying glucose and it's effect on the body. Enough of my soapbox!

Anyway, Zachary's delays have always been consistent. There's never been a delay in social/emotional or cognitive ability, but gross motor, fine motor and language have always been delayed. I always addressed this at his 6 mo. f/u's with the neuro. devel. peds. even though these delays were within correction based on his prematurity. He's now at age with gross motor, about 5 months delayed with language and it's hard to tell with fine motor...skills are scattered and very emergent. His progress has always been slow but steady with intermittent burst of development. He's doing GREAT in preschool!! He just can't walk and chew gum at the same time right now...kinda sounds like my hubby! That's why he's never fallen onto the Spectrum. He has all of these skills (social, language and play), but it's sometimes difficult for him to do them all at the same time due to processing.

We do think the delays have been excacerbated by his diet to some extent. I'm certainly not saying his diet is the sole reason. After all, he was a full 8 weeks premature and his central nervous system wasn't fully developed. That being said, we noticed an amazing difference last summer when we had him gluten-free/CF for four weeks...it was remarkable. He wasn't as bouncy, his ability to concentrate was greater and the increase in language was truly unblieveable. His vocab. increased by 40 words in one week...honest to God. If I didn't see if with my own two eyes, I would have NEVER believed it. Once I saw this transformation with a change of diet, I started asking, "What came first the chicken or the egg??" Zachary has always been a carb and dairy junkie! That's why I'm hoping limiting his dairy (no regular milk, cheese, yogurt, ice cream, etc.) will have an even greater effect on him. I'm not going to the extreme of CF unless I really have to. Whew!! I had a lot to say this morning!

--Kristy

[Guest nini]

that is the one interesting thing about my preemie daughter, she was 6 weeks premature and very tiny, since she has been gluten-free now for 3 years, her level of concentration is AMAZING to say the least, her teachers are always impressed with her and her Dr.s are just amazed. I do think even though she was preterm and suffered setbacks initially, the gluten-free diet has helped her tremendously to not only catch up, but to surpass all expectations. I wish the same for your son.