Toddler With Possible Cd? Help?

[VydorScope]

Our son is 21 months old, and its been a nightmare trying to figure out what is wrong with him. He does not sleep, wakes screaminng in pain. Has had dieahrea for almost 4 week now non stop, and nothing we feed him seems to work.

He was born with severe acid reflux, and was successfully medicated for it, and that worked well till he was around 5-6months old when it seem to go away. We even took him off all meds. But then one day the problems returned. But its different now... and putting him back on the acid reflux meds is not working. We are rippping out our hair trying to figure out what is up. He just had an Endoscopy, but we are still waiting on the biospy. The endoscopy itself shows nothing "remarkable".

He has not gained any wieght since 16month birthday, and has lost probably a pound. We have tried many many diet changes with no success... EXPECT in the last 48 hours we feed him ONLY rice cereal, nothing else as far as food goes. He did have the banana smoothies we make (banana+soy milk in a blender) to combat his dieahrea, but nothing with any form of wheat/oats in it. He used to eat oatmeal and/or cheerios everyday. The last 24 hours with him have been the best he has been in long time. He was able to sleep a three hour nap and wake happy. Used to be he would wake in 40-50 mins in pain. He even slept over night successfully for the first time in a long while.

I realize its not much to go on.. but I have not slept in months... and getting despreate....

Does it sound like celiac disease to y'all? Or is there another tree I need to bark up?

[Guest taweavmo3]

Hi there! Sorry to hear you are going through such a hard time, I think alot of us have been there before. It's very frustrating. I think you are on the right track with what you have done in the past couple of days. I have a 3 year old daughter with celiac, and I think my 13 month old boy has it as well. He sounds similar to your child......ever since I started introducing a variety of foods, he has started to show symptoms. He has had bouts of reflux, still isn't sleeping through the night, and has around 5-6 bowel movements a day. He is very irritable most of the time, and follows me around the house crying to be held non stop. He is thinning out, and his little belly is rock hard.

I definately notice that his symptoms worsen when he eats oatmeal or anything with wheat (usually cheerios or a nutra-grain bar). Maybe you could keep a food diary? I started one a couple of weeks ago for Ben, and it looks really obvious on paper what is causing his problems. He responds well to alot of bananas and rice in his diet too, yesterday he only pooped twice! This was a victory for me, his poor little bottom had a really bad fungal diaper rash and was bleeding. If he could just stop poopin', his bottom could heal.

Yesterday, we went out and he had cheerios for a snack. Three poops today so far and it's not even noon yet, ugh. When he goes for a couple of days without ANY wheat or oats, I can see a positive change. The only downside, is that if I want to get him tested, I have to keep giving him wheat for at least another six months. That is going to be very hard to do...especially if he starts losing weight like my daughter did. I may forgo the test altogether.

Anyway, sorry for the ramble! I think you are definately on to something with eliminating wheat/oats from his diet. Especially since you have seen a + response. I would stick with what is working, even if the tests come back negative (which does happen quite a bit from what I hear). We just started the diet two months ago with my daughter, and the changes I have seen in her are nothing short of a miracle. She is a completely different little girl, inside and out. Not only has she gained nearly 6 pounds and grown 1/4 inch, but she is such a happy child now. The diet is hard at times, but I wouldn't want to go back for anything.....we are all much happier now. Good luck!

[VydorScope]

Umm so 5-6 bowl movements a day is not normal? Okay, I will add that to the list of symptons then! I just thought changing diapers is what you do when you have a toddler.

I have been reading all morning about this (dont tell my boss) and I think I very well could be too. I recently did the Atkin's Diet to loose wieght, and one thing that diet does it remove all wheat/etc ... never felt better in my life then when I did that. Heck, I am anemic, take 300% extra Iron a day for it, but the docs have no idea why I am. No test yet has shown a reason for it...

Everything I read here, esply the testominals fo the posters fits what I have seen. If my son turns out to have celiac disease, I plan to get myself tested. I do not know if they will look for celiac disease in the Biospy, so if they did not I will demand they test him for it.

I can not believe how happy I am right not that my son might have a dease! Seems sick, but if I have a list of foods to aviod, then I can work with this, and he can get some relief. Right now we just randomly guess, and hope for the best. I do not like that plan at all.

[VydorScope]

Forgot to mention we are keeping a food diary, thats how we came upon the diea to try droping Cherrios and oatmeal from his diet to see what happens....

[mommida]

I hate to tell you but the tests for Celiac at your child's age are just not that accurate.

L.

[Guest nini]

as an infant my daughter had very severe reflux, we had her on several prescriptions for this, including zantac. She also had terrible rashes on her bottom that just would not go away, explosive diarreah (that was NOT fun to clean up when she had that once when the diaper was being changed She was also very underweight, anemic, had projectile vomiting, and getting her to eat was like pulling teeth.

2 years ago I was dx with celiac, and started researching it and realized that a lot of my daughters symptoms were CLASSIC celiac. We had her tested but it was inconclusive, her ped.and I determined that she is gluten intolerant and most likely celiac as well, and we opted for no more testing with her as the dietary response was miraculous. When she is accidentally glutened you can tell immediately.

She's 5 now, and she's the picture of health. She is very responsible about her diet and LOVES to eat now.

[VydorScope]

In third day of no wheat/etc and the change so far is the best we have seen. He actully wakes up happy from his naps now! There has been a dramtic change in his behavior, and no attacks at all in 36-48 hours.

I have been going over the foods that we know that bug him, that are

unusail for Acid Refluxl... and foods that DONT bother him that are

normaly an issues...

Some foods that should bother him but dont:

Peperoni, Lebanon Bologna, Totamatos

Some foods that normaly are safe with reflux but bother him:

Ritz Whole wheat crackers, gerber veggie crackers, baked hot pretzles

And so on. If you look at that list there is a comon demononator...

Grains. Specily wheat. The more I build the lists, the more I see that

patern.

I wish I had heard this months ago.... I guess it could still be wrong, but it just fits so well...

[key]

It sounds like you are on the right track. My son has been doing the same thing. He has been gluten free for a month now. Other then a 24 hour period when I gave him gluten and he was sick for four days afterwards. I know for sure he can't tolerate gluten and he hasn't been given the diagnoses. HIs pedi. is pretty certain from his symptoms that that is what he has and I know it is. He had his first normal poop once he was gluten free for a few weeks. He is so much happier. Gaining weight, etc. I have heard that the biopsy may not be accurate in an infant and my husband that is a physician just learned that the latest research is showing that the biopsy isn't the gold standard in diagnosing celiac disease anymore and that the blood tests are better. I am not sure that my son has had all the blood tests for celiac disease yet, but I will check. I am also hoping that they can recheck his blood in six months after he has been on the diet. Really though, his weight was in the negative 10th%, so I don't think anyone would doubt it.

I too am wondering if I may have celiac disease. I was anemic as a teen, I read somewhere that women that don't know they have it are more likely to have kids with birth defects or miscarriage. I have had two out of my three boys have something wrong. Unexplainable. Anyway, I want to be tested.

Ok, I am rambling, but hope you figure out what is going on with your son. I know how frustrating it is. My son was sick from 7 months until 14 months.

Talk to you later.

Monica

[Guest taweavmo3]

Monica-

That is really interesting what you mentioned about birth defects and m/c. I haven't had any miscarriages, but two out of my three children were high risk pregnancies. In my third pregnancy, I had too much amniotic fluid and Ben had a cyst on his brain. With my second pregnancy, I had too little fluid, and delivered at 37 weeks after all the fluid was gone. Luckily, they were born healthy, without complications.

My dh thinks I most likely have celiac disease. I am starting to agree, I have alot of the classic symptoms. In the past, I attributed alot of the symptoms to hormones, or from not getting enough sleep, stress, etc. I am always anemic, and had a real problem keeping my iron levels up while pregnant. I have gone mostly gluten free now, and I am starting to feel much better. I've actually started putting on a little weight too, which previously was only possible when I was preggo! I don't think I'll go through any testing though, I've had enough of doctors and tests in the past few years after having 3 babies in 5 years, and the seemingly endless visits to the pediatrician! It'll be easy to stick to the diet, especially if I have two celiac children. If we ever do decide to have more children, hopefully I can avoid another high risk pregnancy if I'm gluten free! That would sure be nice.

[VydorScope]

Well last night he did not sleep though the night, but I did not give him maalox. When I checked on him he was sitting up and fussing. I remember reading someplace (here maybe) that when ppl have celiac disease problems thier stomaches get hard. So I picked him up and checked. Yep, it was definitly hard and he realy did not like me touching it. He had store brand corn flaks for dinner, which I thought were gluton free when I bought them, but now that I have read more I am not so sure. They have "barley malt extract" in them. I see that both Barly and Malt are listed to aviod, so I am going to blame that for now and move foward with getting him realy gluten-free.

I gave him tyneol for the pain and held him till he feel asleep in my arms... he did fine after that. Dont know if that was right thign to do, but it got me back to bed at least...

[Guest nini]

in the beginning it is so hard to know what is gluten free and what isn't. It's hard for everyone. That's why we are here.

You ask if you did the right thing? Who knows. You did the best you could in the situation. You are a great mom for going through this process of trying to figure out what is making your child sick. Remember that. You are going to make mistakes. You are going to accidentally buy something that you are pretty sure is safe and feed it to your child with the best of intentions, and still have accidents. As you go along, you will make fewer and fewer mistakes. It WILL get easier.

When my daughter accidentallly gets glutened I give her 1/3 to 1/2 of a chewable pepto bismol tablet. This usually relieves the cramping enough for her to rest, or it makes her throw up the offending food before it completely makes it through the bowels (if it's still in the tummy)... And then if the pain is still really bad, I've given her tylenol so that she can rest. Just keep doing the best you can.

Natures Path makes some really good kids cereals under the Envirokids brand, that are labled specifically which ones are gluten free. They have a frosted flake cereal that my daughter just loves, and a cocoa krispy type cereal, oh and the Gorilla Munch is a lot like Kix, only gluten free. I buy it at Kroger or Whole Foods or my local Co Op (depending where I am at)

[VydorScope]

You are a great mom for going through this process of trying to figure out what is making your child sick.

Well, I think I would make a horrible mother... but I like to think of my self as a decent father

Natures Path makes some really good kids cereals under the Envirokids brand, that are labled specifically which ones are gluten free. They have a frosted flake cereal that my daughter just loves, and a cocoa krispy type cereal, oh and the Gorilla Munch is a lot like Kix, only gluten free. I buy it at Kroger or Whole Foods or my local Co Op (depending where I am at)

Hmm we shop at kroger here in Nashville, I will have to look for this brand.. thanks!!

When my daughter accidentallly gets glutened I give her 1/3 to 1/2 of a chewable pepto bismol tablet. This usually relieves the cramping enough for her to rest, or it makes her throw up the offending food before it completely makes it through the bowels (if it's still in the tummy)... And then if the pain is still really bad, I've given her tylenol so that she can rest. Just keep doing the best you can.

Pepto Bismol? I will have ot check with my peditricaion and see if he is old enough for that, thanks!

[egardner]

Props to you, its refreshing to see a dad searching for answers too!

[VydorScope]

Okay I have been looking for a while and can not find this answer... where in you body do these pains happen? Lower right, little below ribcage?

[Guest nini]

oops! I just assumed "mother"!!! I might have confused you with someone else I recently read about... oh well! sorry!

[VydorScope]

I am in shock here!

Okay today we fed him only "gluton free' products (found the cereal mentioned, and some other products near it) and get this.. at lunch he had them plus an orange (frist one in ages). No Maalox. Then put him down for a nap. Hess been a sleep fro almost 2 and 1/2 hours now!!! He normaly wakes in 40-50 mins in pain! No refluxing, and no pain, therefor he has to be celiac disease I think. This si a major break through for us.

[kaylee]

Hi,

Sitting here reading these posts is bringing my own experience with my son (now 2 1/2, and gluten-free for over a year now - wow, time flies!) back with a vengeance. I felt so alone at the time (no help from the pediatrician, unfortunately), and can remember so vividly those feelings of being beside myself with worry, knowing something was very wrong but having so much trouble pinpointing it... until I started the food diary and things got clearer and clearer. Cheerios figured big as a deciding factor, I recall. One Cheerios episode is forever branded in my memory, and there has been no intentional wheat since that day! By the way, I also hadn't yet become an expert at reading labels and had taken the "100% whole oats" on the front of the package to mean that that was all they contained. Oops. Plus, I had only started by eliminating wheat at that point, never actually having heard of celiac disease and the whole gluten gang.

Get me on this subject and I feel I could go on and on and on and ...

But one point, as you are starting out: If your son is anything like mine, you may discover that he becomes increasingly sensitive to smaller and smaller amounts of gluten the longer he is gluten free. This is when you become VERY good at not only reading labels but also calling companies and posting "do any of you know if such and such a product or medication contains even trace amounts of gluten?" messages.

In terms of pain location, my son hasn't ever been more specific than "tummy", and I am lucky enough not to have abdominal pain as a symptom.

Best,

Kaylee

[kaylee]

Oh, I hadn't seen your latest message. I can relate to that too! It must feel good!!

Keep up the great work! Kaylee

[Guest nini]

YAY! I'm glad he has had a restful nap so far! This is a good start. Good luck!

[VydorScope]

WOW!! His dieahrea is GONE!!! After 4 weeks thats amazing. Forget any stilly tests, Im a believer.

[celiac3270]

Yay! Glad he's feeling better. Congratulations

[VydorScope]

I guess I no longer care what the biospy shows, we have our answer. Thanks all.. I spent the last few day sdoing nothing but read up on this site, and y'alls posts for direction.

[angigz32]

You need to see a gastrologist if you havent already. My son is the one with the G tube in his stomach. A sign of a hard stomach is he is not digesting, And if your kid is staying up and crying. I would take him to the hospital. Sorry, from my experience that is a very bad sign. I't could also mean he has a bowel problem. JUST MY OPION.

[VydorScope]

You need to see a gastrologist if you havent already. My son is the one with the G tube in his stomach. A sign of a hard stomach is he is not digesting, And if your kid is staying up and crying. I would take him to the hospital. Sorry, from my experience that is a very bad sign. I't could also mean he has a bowel problem. JUST MY OPION.

thanks, but he had an endoscopy on tuesday.. we are just waiting on the bisopy... besides that he looked good in htere.

[Merika]

Hi,

Kudos to you for figuring it out That is a HUGE step forward, and I'm really happy to hear your ds is doing so much better

As for yourself, if you think you have it, do the blood test now while you have gluten in your system or you may find yourself wondering later....Or, you may find yourself needing an "official" diagnosis for some purpose down the road. You cannot test positive for celiac if you have not been eating gluten for a while.

Btw, I have an "official" diagnosis, but it was also not done at my doc's office, and was not submitted to insurance, and insurance does not know about it. It's my own personal paranoia (and I got the test for free during a medical "canvassing" study), but I pay for my own health insurance and in our current health care climate, am worried I could get turned down, or rates jacked up by unveiling it, yk?

Merika