16 Month Old, Possible Celiacs...very Confused

[Mommy2Ellie]

Hi everyone...I'm brand new here, also brand new to the whole celiacs thing. Hopefully I won't have to have anything to do with it, but we'll see. I have a 16 month old named Ellie who has had health problems since day one. Heres a quick list of the major problems:

-Severe weight gain issues. She was 9 1/2 pounds at birth putting her above the 97th percentile (she was 2 weeks early), and now shes below the 3rd. Shes been in 6 month clothes for 13 months now.

-Severe gastro issues. She didn't poop on her own until she was 7 months. Before that it was a lot of meds and suppositories. Now shes a lot better, but we still have to watch what she eats. Shes very prone to diarrhea/constipation, but shes not on any meds anymore.

-SEVERE colic until she was 6 months old. Not gonna elaborate...don't want to remember it......

-Reflux until she was one year old.

-Behavioral issues. She wouldn't go to anyone from about one month. Even now, shes horrid with people. Even granparents. May just be personality. Thats what we've chalked it up to.

-This is just gonna sound weird.....She will only cuddle with myself or daddy, or run around. She doesn't play with toys, or any of the normal child activities. Never has. Always wants to be cuddled or run. Again, could very well be her personality. Just seems weird to us. Shes very high-strung, and has no attention-span. That being said, shes very smart. Shes 16 months old and can say all her animals and animal sounds. Her development is a-okay.

-Very, very gassy and very smelly poops.

-Won't eat much of anything. Basically all she wants is fruits, veggies, or meats. Doesn't want pasta, breads, crackers, snacks, or any milk products.

Theres a bunch more, but those are the basics. Her doctors have been concerned from day one and we have literally seen every specialist in every field and had more tests than I thought possible in 16 months. Every two months they come back to celiacs and run blood tests, but they always come back negative. They keep doing them though. Its really frustrating. Not quite sure why I'm posting this, a vent or advice maybe? But thank you to anyone who read this far!

[dandelionmom]

From what I've heard, the blood test at that age isn't reliable because it often results in a false negative. At this point, I'd try going strictly gluten free for a trial period or talk to your doctor about a colonoscopy.

I hope you find some answers and that your daughter feels better soon.

[MarsupialMama]

You poor mama!

Been there, done that! I know your stressing, but if your little one does have celiac, it DOES GET BETTER and life gets easier!

I would suggest going on a gluten-free diet regardless of the outcomes of the tests, because they can be very unreliable until around age 6 as I understand. The proof is in the diet. If she is gluten intolerant the only way to find out for sure is to go gluten free and I personally recommend giving it a 3 month trial. Everyone has different results on a different time table, but three months should give you an idea of whether or not it is helping.

If you want to do that, research up on things that are truly gluten free - we had success in seeing improvement with our daughter, and then she went downhill again. We found out she had gotten "glutened" from something we though was gluten free.

The easiest way is to feed her lots of fresh fruits and vegetables, baked or steamed, or homemade soups. Baked potatoes with olive oil, prune puree if she is constipated, avocados are great for weight gain, and lots of fruit smoothies. The more you stay away from processed and prepackaged food, the better off you will be at not having "accidents" (which we all do!!) and seeing improvements. You can also get some rice or rice pasta.

Many people also suggest avoiding dairy and soy as these are hard on a sensitive system to digest and tend to create problems as well.

You said "Basically all she wants is fruits, veggies, or meats. Doesn't want pasta, breads, crackers, snacks, or any milk products." Sounds like her body is telling her exactly what she needs. She will get the most nutrtion from the fruits and veggies, and her body is probably craving the protein in the meat since she is small and needing to grow.

In this case, Go with the flow! She doesn't need all those grains anyway. Just make sure she gets good fats and proteins (beans are great!), and you won't have to worry about calorie intakes.

Hang in there Mama!

[Mommy2Ellie]

Thank you for your posts. They're very reassuring, which is definately what I need!!! I actually think that we're going to try the gluten-free idea. Its really overwhelmig though. I can't any really good lists "heres what you can and can't eat" and I'm really worried about accidently taking away some key vital nutrient. Its kinda scary.....I also worry about her growth. Every time I see her doctor, she tells me that she needs MORE calories per day to grow. Poor kids already eating every two hours. I can't make her eat and I refuse to try. I want to make sure that when I do this gluten-free thing that I make sure to include lots of high-fat/calorie foods so she *hopefully* will start gaining weight. I don't want to make it any worse. Ugh....I'm so utterly stressed out.....

[wsieving]

You sound just like us sister. Granted, my DD didn't start out nearly as large as yours, she was only 7lbs 13ozs. She was very colicky early on, after a few months of this we thought... she must be hungry, lets try some solids... didn't help, she never had an appetite and her cheeks started getting eczema. She never would play much until the last month or two, was ALWAYS needing me, other people couldn't watch her at all because she would cry the entire time. That is starting to get better. We started struggling with diarrhea/constipation from around 9 months on. This is the time she started dropping off the growth charts of course. At ten months they discovered swollen lymph nodes in her groin, never found a reason, they are still swollen. She has had tests run also, all neg. After that I checked out a book with FAQ on gluten free living even though they said her test was neg for celiac. I do not know how accurate this is for little ones, but according to that book in order to test positive you must be consuming the equivalent of 4 slices of bread's worth of gluten per day for 1-4 months to test positive on those things. So we finally decided to go gluten free to see if it helped. We have only been gluten free for 3 days now, so nothing much to report yet, but I will keep you updated. Seems like you are in a similar situation, and I say go for it. I was overwhelmed at first, but after doing a lot of research it isn't as hard as it seems. Best of luck to you, and I hope you can get your daughter well!!

[nitu-752002]

Hi There

I totally understand where you are coming from, the spilliting heachache I truly still have it.

My DD is 27mth and quite underweight at just 22lbs. She was 1mth premature and weighted at 5lbs 14oz. She started dropping off from her 25% (12mth) to no where on the chart now. I breastfed her till 24mth as she was a very picky eater and has intolerance to dairy and may be soy. She was colicky but only for 3 weeks and her development etc have been on tract. We also did a blood test for celiac at 12mth and it was negative. She also has awful smelling stools and for the past 6mths she goes from being constipated to normal to very loose stools that are green, yellow or sometimes orangish brown.

I was becoming desperate for her to gain wait and didn

[crunchy-mama]

If I remember right the Rice Dream milk is NOT gluten free. Something to look into.

[Mommy2Ellie]

" At ten months they discovered swollen lymph nodes in her groin, never found a reason, they are still swollen. "

Thats so weird!!! Ellies always had swollen lymph nodes at the base of her skull. Nobody can give us a reason for it!

[nitu-752002]

I am in Canada and i buy the presidents choice organic rice milk but honetly i dont know if it does have gluten or not, will have to call them. I have stopped that also for the past week since i wasnt sure and she is on fortified orange juice.

[blindconfusion8]

My son is in the process of being diagnosed. I can't say that i have had as hard a time as you, but somethings you mentioned rang very clear to me.... first off, Owen has NEVER played with traditional toys. I always thought this was just because he is an active boy... ( i think you know what I mean when I say active). I agree with you, this is not a "smart" thing, but a very real behavior "issue". Also, if the dr.'s have been concerned from day one, and haven't taken steps to help you diagnose this... i would look into a different dr. My dr, at our last check up, (knowing that I eliminated dairy for two full years), told me that it was time to fix this (my son does not suffer from weight loss at all). It was his concern that really got our ball rolling. My dr. also wanted me to make sure that I realized that this is a hereditary disorder, and told me that we should have our other two children, and my husband and I checked. (I am fairly certain that I am a carrier, I'll explain in a minute!) So in short, my concern for you is that this is a very dangerous disease, that should not be taken lightly, and you are your daughters best (and maybe only) advocate. I wish you unending luck, and grace through this process.

Also, my son, since birth, has had two swollen noids. one at the side of his neck, and one on the base of the back of his head. this is odd to me, and i have always been told that this is "normal", I don't buy that... especially after reading your posts... this should be something that we all look into, and we should not except it as "normal". Please, if you get any information about that, please share it. and I will do the same.

So, this is a hereditary disease, which means, you or your husband carries the gene. do you know that you can be a carrier, and never feel the effects, but can have long term complications anyway? I did some research... it is scary, it makes me want to tell the whole world, healthy or not, to give up gluten!!! you should look into (if you have not already) the symptoms of adult onset and see how you and your husband measure up... take action now! I noticed when Owen was born that I was having severe post partem depression... and I missed a few periods, and i would ache all over, and my skin was super sensitive, all these add up to an adult onset celiac disease. (we both have yet to be tested fully). Also, on a side note, Owens blood work came back negative, but out gastroentologist, was certain that it was a false neg. PLEASE don't give up when you hit a false negative... this is a common accurance, and then children go on living in a terrible food world.

I hope I have not overwhelmed you... hang in there, this can be a ride we take together. (is there a support group in your state??? there is not one in mine, but there will be as soon as Owen and I are diagnosed!!!)

Peace, my friend,

-Amy

[blindconfusion8]

At ten months they discovered swollen lymph nodes in her groin, never found a reason, they are still swollen.

my son who is three, and in the early staged of diagnoses also has swollen lymph nodes, on his neck (below his ear) and on the back of his head, near the top of his neck.. i have also been told that there is NO link, and that this is normal... i have a different opinion... i have three children, and Owen is the only one with the issues he has... i would like to know more about these nodes... if you learn anything, please pass it on... also, maybe asking about them again, or continuously may produce a more accurate answer...

thanks for your post

-Amy

[blindconfusion8]

From what I've heard, the blood test at that age isn't reliable because it often results in a false negative. At this point, I'd try going strictly gluten free for a trial period or talk to your doctor about a colonoscopy.

I hope you find some answers and that your daughter feels better soon.

my son is going in for an intestinal biopsy... this is done endoscopicaly. i don't know about the colonoscapy... is this a more typical route for diagnosis?