2Yr Old Being Tested

[milkmommy]

My daughter is now 30 months but has been having difficulty since birth. She was born with a distended abdomen and it's never gone away. She had very loose stools for the first 6 months and "colic". Then she switched to constipation and now has to take laxatives everyday. Her constipation gets so bad she bleeds when she goes and has completely stopped using the potty from the trauma. She also has great difficulty sleeping,( waking every hour, crying in her sleep,etc.) Complains of a sore abdomen and feet?, holds her head, (?headache) is hyperactive, very sensitive/fussy, and still doesn't ear much.

For 2 yrs the family dr focused on the sleeping and eating issues, telling me I had to force her, let her cry it out, and that she was manipulating me. Lol!!! I don't believe any of these things!!!

Finally last month she referred us to a pediatrician. ( in the referral she even wrote that "mom has anxious" and won't do behavior modification. Basically belittling my instincts!! Anyway, when he found out I had celiac. He agreed to screen her. Her antigliadin Iga and ttg were negative but her igg was extremely high. I'm confused what to make of that. I've read Iga and ttg aren't accurate for her age group and that igg is not very specific???? I'm waiting to hear about her iron, b12,hgb results at our next appt. Next week.

Is there Anyone here that knows about pediatric cases? Or going through the same thing? Any thoughts or advice?

I should mention she is long and lean but with a pot belly. She is 37.5" and 28lbs. She is still breastfed a few times a day which I know protects her intestines from being damaged,(reason for normal ttg?)

[tarnalberry]

breastfeeding may not protect her from getting damage, but will certainly still be helpful in giving her the most easily digestible nutrients. while I don't currently know the details on which testing is most accurate, testing in kids is notoriously unreliable regardless, and I can only recommend simply trying her on the diet. I would also consider eliminating dairy from YOUR diet and hers, if you're willing, as dairy is one of the most common offenders in causing babies digestive distress even when they are exclusively breastfed. (and good for you for sticking to your instincts!!)

[anna34]

My daughter, who has celiac, was diagnosed at age 5 but had a lot of the same symptoms that you described. From birth she was a terrible sleeper, lean, pot belly, short, and the constipation/diarrhea cycle started at around age 3. She was also breastfed. She also backtracked on the potty training once the bloating and abdominal pain kicked in. It wasn't until her iron levels kept dropping despite supplementation that they considered celiac. I was also labelled "anxious" by her doctors. I'm sorry, but what parent wouldn't be anxious/concerned when their child is so sick?

Anyway, once she was diagnosed and began the diet, everything turned around for the better within a couple of weeks. Except for the sleeping thing - I figure that's just her personality.

Her brother, who is two years old, was tested and it came back negative. We were told that the tests are not very accurate until the child is over age 5, and even then can still be falsely negative. We were told to re-test in the future. Hope this helps.

[Jakers]

Wow, I feel I am reading about my own daughter!

She is now 4.5 and has been constipated for 3 years, she is on peg flakes everyday that make her have bowel movements (that are still so hard and painful-she holds it)

Her blood test indicated celiac, I have it too.

She just started sleeping through the night!, She is miserable have the time, cries (screams) over everything, has issues with clothes, shoes, socks. Anxiety.

we have been to every doctor possible.

Finally her biopsy for celiac is in 2 days! I will let you know.

[mommida]

I think I am noted in my children's records as B^!<h.

Let the doc make stupid notations, it will be easier for the next patient to sue.

Get this ped. refer you to a pediatric gastroenterologist. It can be very difficult to get an accurate Celiac diagnoses. Other problems present with these symptoms and prepare yourself for your child having an endoscopy with biopsy.

Don't stop eating gluten until all the testing is done! Get your appointment asap.

[milkmommy]

I would also consider eliminating dairy from YOUR diet and hers, if you're willing, as dairy is one of the most common offenders(and good for you for sticking to your instincts!!)

I have actually just started limiting both of our dairy a bit to see if it helps both of us. she still eats yogurt and cheddar which i here should be okay, and lactose free milk on cereal. And since she has to go for allergy testing for penicillin, (got hives last week), I convinced the dr to do food allergies too!!! YEAH!! SMALL VICTORY!!

I was also labelled "anxious" by her doctors. I'm sorry, but what parent wouldn't be anxious/concerned when their child is so sick? Anyway, once she was diagnosed and began the diet, everything turned around for the better within a couple of weeks. Except for the sleeping thing - I figure that's just her personality.

Im happy to hear things worked out for you!! I agree, how could i not be anxious watching my little girl suffering everyday I think part of her sleep problem may be personality too but there is definitely a pain aspect.

Wow, I feel I am reading about my own daughter!

.......(that are still so hard and painful-she holds it)

Her blood test indicated celiac, I have it too.

She just started sleeping through the night!, She is miserable have the time, cries (screams) over everything, has issues with clothes, shoes, socks. Anxiety.

we have been to every doctor possible.

Finally her biopsy for celiac is in 2 days! I will let you know.

Im sorry you are going through this too..... my daughter tries to hold it in too which only makes it so much worse. she has started hating baths, (previously her favorite), because it makes her go. My sweetie has a hard time with many things too. loud noises, clothes, brushing hair, etc...all makes her upset. I have considered something called Sensory Integration Disorder for all that but maybe its a common sympton of celiac in children????? I dont know..Please let me know how the biopsy goes. Best Wishes!

I think I am noted in my children's records as B^!<h.

Let the doc make stupid notations, it will be easier for the next patient to sue.

Get this ped. refer you to a pediatric gastroenterologist. It can be very difficult to get an accurate Celiac diagnoses. Other problems present with these symptoms and prepare yourself for your child having an endoscopy with biopsy.

Don't stop eating gluten until all the testing is done! Get your appointment asap.

Drs can be so rude, ( I know first hand as I am a nurse), They told me for 18 years my problem was in my head and turned out to be celiac so Im going to get to the bottom of her issues no matter what they call me!!

[tarnalberry]

I have actually just started limiting both of our dairy a bit to see if it helps both of us. she still eats yogurt and cheddar which i here should be okay, and lactose free milk on cereal. And since she has to go for allergy testing for penicillin, (got hives last week), I convinced the dr to do food allergies too!!! YEAH!! SMALL VICTORY!!

If you're going to try eliminating dairy, you should eliminate ALL dairy. It's not the lactose I'm suggesting is an issue, but casein. (Lactose intolerance comes from a lack of lactase in the gut to break down the milk sugar. Common with untreated celiac, it causes diarrhea, bloating, and lots of gas - the symptoms are quite consistent.) Casein is the milk protein and is in higher quantities in cheese and yogurt, where the milk sugar has been either eliminated or processed by bacteria.

Food allergy testing is VERY hit or miss, and not as reliable as elimination diet testing, but the latter is HARD!

Constipation is my main symptom from having milk (and it takes a little while to kick in and clear up). So I can just reiterate my encouragement to eliminate ALL dairy for two or three weeks.

[milkmommy]

If you're going to try eliminating dairy, you should eliminate ALL dairy. It's not the lactose I'm suggesting is an issue, but casein. (Lactose intolerance comes from a lack of lactase in the gut to break down the milk sugar. Common with untreated celiac, it causes diarrhea, bloating, and lots of gas - the symptoms are quite consistent.) Casein is the milk protein and is in higher quantities in cheese and yogurt, where the milk sugar has been either eliminated or processed by bacteria.

Food allergy testing is VERY hit or miss, and not as reliable as elimination diet testing, but the latter is HARD!

Constipation is my main symptom from having milk (and it takes a little while to kick in and clear up). So I can just reiterate my encouragement to eliminate ALL dairy for two or three weeks.

Oh wow. Taking dairy away will be hard if she can't have cheese or yogurt. That's all she really eats.

Are there any yogurts substitutes?

I've seen tofu cheese I could try for her, ( used it as a treat for my dog who is allergic to dairy, all grains and common proteins sources)

Is their casein in human milk?

[tarnalberry]

Soy cheese generally still has casein (there are one or two brands that don't). You can get yogurt made from soy or coconut that are casein free. (There's also drinkable coconut milk that has a decent amount of fat that she might enjoy.)

Human milk has casein, but different subtypes of casein affect people differently, and the primary subtype found in cow's milk is the most common offender. The casein in human milk bothers VERY few children (it's really rare and you would have known about it before she was a few months old; it requires very special, expensive formula). But, mom consuming cow's milk can cause digestive distress as the cow milk casein does pass through breastmilk (it's the most common culprit in dietary reflux in infants, as I understand). So, for her to be dairy free, you need to be dairy free as well.

It may mean that she increases her nursing for a few weeks, while you try to get her to eat other things. But three weeks or so, for both of you, should tell you whether or not it's making a difference.