Falliing off Growth curve - celiac testing - ?

[Mommy2JulietJocelyn]

I guess I am pretty new to this - DD#2 is 3yo, 31.5inches tall, and weighs 22lbs - she has only gained a pound in a year. She eats - grazes doesn't sit and eat a meal but eats a better variety of foods than my 4 y.o. She is healthy in every other respect - mentally, emotionally & socially - she is not ill appearing, she does get ossasional constipation - she has since 6 months old - she was on Miralax for 6-9 months when changing to foods and whole milk due to the constipation but has for the most part been fine for over a year in that respect. She has no other issues - she has fallen off her own growth curve twice now - the first was between 6 - 12 months - she gained a total of 1.5 lbs between 6 - 12 months but gained no length btween 9-12 months - and didn't make much progress by 15 months that she had blood work done for celiac, thyroid, liver, and cystic fibrosis - all normal and I am not a carrier for CF so she could not have that either. I am trying to find out if anyone else has had this issue or is there usually other symptoms to look for - she has no abd pain, diarrhea, vomiting, or resp issues - she does get hot quickly and pink cheecks but that does not stop her from playing outside. She knows she has to wear a hat and have sunscreen on. She gets large whelts from bugbites and has been tested & has a peanut allergy afte getting belly pain & gas after eating PB everytime. The pedi suggested that the GI Dr will want to do biopsy of her intestines to check for celiac - is there any other way to test? I have looked at the website but I guess I am just looking for real people to talk to and hear their stories. Thanks,
Carol

 

[Selket]

Well... neither of my kids have celiac but my younger son has type 1 diabetes - which is associated with a greater incidence of celiac. He also is extremely allergic to peanut butter and some tree nuts and has outdoor allergies and eczema and asthma.

His growth charts are normal but he has had many symptoms of celiac (which can affect the blood sugar numbers IF the person is type 1 - something you wouldn't have a problem with cause your child is not diabetic). Anyway I get him tested for celiac about every year with a blood panel and it has always been negative.

All of that was just to say that there is an *excellent* celiac discussion group at the Children with Diabetes forums here: http://forums.childrenwithdiabetes.com/forumdisplay.php?f=5
The discussion group is just about celiac and I'm sure that though your child is not type 1 the peope there would welcome your questions and could answer.

I wanted to add that it has not been my experience to see children biopsied for damage to the intestines unless their celiac blood tests indicated a problem. Most parents who discover their kids have celiac were having routine tests done and saw no signs (because celiac and type 1 are so closely linked, many type 1 kids are tested routinely).

Have you seen the pedi GI dr. yet? I would talk to them before getting too worried about the biopsy.

 

[Mommy2JulietJocelyn]

We haven't gone yet - her appointment is July 30th. my pedi wanted me to wait for an appointment with a specific dr in the group. I still tend to think it is my daughters genetics - my MIL is very petite at 4'8" and skinny, DD#2's hand print at 6 months old is smaller than DD#3's hand print at 1 month old - so I know her bone structure is different and that she takes after my husbands mom's side of the family. DD#1 is the spitting image of me as a child and not just in looks but personality too. I have been an ER nurse for 8yrs and when I think about my kids I just kep thinking the worst things like some type of cancer. I know that that is a far fetched thing though. Medical knowledge goes right out the window.
Carol

 

[SueM in MN]

I am going to move this to the disABILITIES Community Board where it will be a better fit.

 

[mykidsintow]

My friend has celiac. She is on a gluten/dairy/peanut/corn free diet. She is perfectly fine as long as she follows her diet strictly.

As for the growth chart... you are the momma. If in your heart you think she is just small, then you are likely correct. My daughter has a syndrome that includes "short stature". They have tried to ram growth hormone and steriod injections down our throats since she was about 8 months old. I have told them all to shove off. She was obviously meant to be small and thats fine. She will be 5 Aug 8th. She is 25 lbs and 31 inches and perfectly healthy (aside physical syndrome challenges). They still mention "options" to help her growth... ha! One would think in 4.5 yrs they would giveup, but nope.

Follow your heart and your gut. Mommas know best!

 

[bookwormde]

If you are not confident in what you find out at your appointment then I would get an appointment with one of the major children’s hospitals in the area (CHOP, A I duPont etc) especially before doing invasive work like a biopsy.

bookwormde

 

[mechurchlady]

Definitely have the doctors check her insides. Celiac causes the body to attack various other body parts which vary from person to person. Stomach damage means malabsorbtion such as not getting vitamins, minerals, and fat. This has cause me dental problems, breathing problems, and a poor immune system. Celiac may show up a little bit or full force. It can affect heairng, vision, blood sugar, emotions, moods and so much more


laurie.

 

[kadesha]

My daughter has fallen off the growth chart. We came to find out that she has urinary reflux. Her urine refluxed into her kidneys when she would go to the bathroom. She ended up having some kidney damage to one of her kidneys, which is what they are attributing her small size to. She had surgery to fix the problem, but the damage to the kidney is permanent.

 

[Selket]

I just wanted to add that you do not want to put your child on a gluten free diet just to see if that helps -because that will affect the testing they might do. Just in case you are tempted....

 

[Talking Hands]

I was always below the growth chart and still am at 60. If you feel she is just naturally small don't worry about it. Some people just are. I'm the same size as your MIL. And my aunt was even shorter at 4'2". It just runs in the family.

 

[KadysMom]

I have the same issue with DD6. She wasnt on the growth charts from 3 month on. We have dealt with every kind of testing. When she was 9 months old she went to the GI and had an endoscopy done to see why she had such bad reflux.

When she started eating, she would vomit. She starting refusing food. She would drink formula, but that was pretty much it. She was tested for food allergies and celiac. Both were negative

Fast forward a few years. When she was 5 she was tested by an allergist. Those test came out negative for food allergies. Her pedi did a blood test and she tested positive for an egg allergy. She is also sensitive to milk. We switched to soy and stay away from anything that has milk, whey, and other milk proteins. She was 28lbs when she was diagnosed. It has been just over a year and she is up to 44 POUNDS!!!!

Please feel free to PM me with any questions

 

[kmjmom]

My DD and DS both were way below on the growth charts. My DS had a flat line. We saw an Endocrinologist who ordered an MRI to check his pituitary for tumors, blood work and the final test was IGF testing to measure the amount of growth hormone he was producing. It was extremely low. They also checked for Celiac and both were negative. He, and eventually my DD were diagnosed with growth hormone deficiencies. It's not just about the short stature. It also affects puberty. Thanks to intervention, my children have grown. I gave them daily injections of growth hormone which was monitored very closely by the endocrinologist. My son has completed treatment and is about 6 feet tall. When he started treatment before his freshman year of high school he had not yet reached 5 feet. Fortunately because of her brother, my DD was tested sooner and did not develop as great of a discrepancy as her brother. Good luck with your precious one!

 

[Vijoge]

We haven't gone yet - her appointment is July 30th. my pedi wanted me to wait for an appointment with a specific dr in the group. I still tend to think it is my daughters genetics - my MIL is very petite at 4'8" and skinny, DD#2's hand print at 6 months old is smaller than DD#3's hand print at 1 month old - so I know her bone structure is different and that she takes after my husbands mom's side of the family. DD#1 is the spitting image of me as a child and not just in looks but personality too. I have been an ER nurse for 8yrs and when I think about my kids I just kep thinking the worst things like some type of cancer. I know that that is a far fetched thing though. Medical knowledge goes right out the window.
Carol

Carol-
We have a Jocelyn, also. Tiniest little 11 y/o your probably going to find. She finally weighs in at 50 lbs. Not a thing wrong with her-she's just thin. Her dad only weighs 140-he's about 5'7".

 

[ecki]

What are they symptoms of Celiac's? Kayla's pediatrician wouldn't even do a IgA screening because Kayla was growing at a steady rate. Never mind that kids with Down syndrome have an increased risk for Celiac's!

Since Kayla was born, she never had firm poops. Always loose or very soft. We thought she might be lactose intolerant, so we cut out dairy. Made some difference, no longer loose, but still soft (like applesauce or melted chocolate).

When Kayla was diagnosed with Autism, we tried the gluten free diet. Surprise -- we actually had firm poop! Even marbles! This was amazing!

However, since we didn't see any cognitive or developmental benefits, we have been trying to wean her off the gluten free diet since it's so darn expensive (she only eats like 5 things). We slowly replaced her GF cookies and pretzels with regular versions.

And now Kayla has loose stools again. Especially after she gobbled down 6 Chicken McNuggets on Thursday. Sheesh, she's been pooping nonstop ever since! And she also has a very bad diaper rash, which she never had when she was gluten free.

Is it the gluten? I'm thinking of keeping her ON gluten products until we can see someone. Unfortunately, that won't be until September because we are changing insurance plans. But we won't need referrals anymore because I'm tired of explaining to her pediatrician WHY she needs all these tests done (even when I show her doctor the Down syndrome health guidelines!).

So, if I'm looking at lactose and or gluten sensitivies, should I see a GI or an Allergist?

Sigh, maybe I will put her back on gluten-free diet at least until after our WDW vacation. I don't want to be cleaning up poop all day!

 

[mechurchlady]

The celiac damages the stomach which causes malabsorbtion. Like with the foods that block fat you will see a very pale poop that often is stinky and about cafe au lait in colour. That is because there is too much fat in the poop.

Malabsorbtion can lead to failure to absorb vitamins and minerals. This can lead to changes in moods, depression, fatigue, dental and bone problems, vision, hearing, internal organs, and even diabetes. For me the inability to absorb fat means dry skin and shedding hair. Also for me there is gas that builds until I get chest pains like a heart attack, back pains, and diminished breathing. You can hear me burping in the next state.

What is weird is that I am fat and had no real symptoms until diagnosed because so many things were counter acting each other. Each person is different and one person may not have the same symptoms.

Can I come over and slap your doctor? PLEASE? Children that cannot communicate are not going to be able to tell mommy they have a belly ache, that they are sleepy because of low sugars, are overheated or itching. When a child has diminished abilities to express itself then a doctor should be trying everything possible to rule out things. He should do the blood test which is noninvasive and would either rule out celiac or imply it is there and thus you can change the diet.

 

[rantnnravin]

My DD is now 8 and I went through some very similar experiences as OP. Doctors were constantly "concerned" about her size. NEWSFLASH: Her mom is only 4'10"!!!! - and my mom, who was standing in the doctor's office with me says she is the spitting image of me at her age. Dr. shrugs it off, sends her for a myriad of blood tests, - inconclusive. Makes me keep a diet diary- no matter what the child ate or when, she consistently cut off her eating at 500 calories per day. So if she had a hi-cal shake and such in the morning, she didn't eat for the rest of the day. She, too, would graze throughout the day, preferred vegetables over french fries - still does. The "Nutritionist" they sent us to actually suggested giving her french fries slathered in mayonnaise !!!
Doctor wanted to perform a stomach biopsy. She tried the: "Her head circumference isn't what it should be - and that's brain development" scare tactic. This is a child who free-associated over 150 words at 9 mos. mmmmmokay. riiiiight. It all boiled down to this; My daughter is happy, healthy, bright, intelligent, energetic, not crying all the time, not fussy, not lethargic, not getting experimented on. We found another doctor who has taken the full spectrum into consideration for the past 6 years and couldn't be happier.
You're the Mom OP. You know your kid better than anyone. YOU know when something is wrong. YOU know when she's just fine.

 

[handicap18]

Getting to a celiac diagnosis sucks. My wife is currently going through it. Brigham & Woman's Hospital in Boston has a Celiac clinic that she went to 3 weeks ago and before they can test for celiac she had to go back on a diet that included at least 2 pieces of normal bread a day for 6 weeks. So you do need gluten in your body to get tested for it.

Oldest DS had sensetivity issues and this includes eating food. He has been tested for everything, but his issue is acid reflux. Since being on medication he has been doing better, but he has never had weight or growth issues.

DD who is 3 1/2 and also has Trisomy 21 (Down syndrom) has also been tested as it seems that people with Trisomy 21 are more at risk for getting celiac. In fact another family we are friends with has a 2 year old son with Trisomy 21 and was way off on the growth charts even on the DS charts. His mother finally put him on a gluten free diet and within 2 weeks had gained 3 pounds. Their doctor is going to wait until he's older to test him since it is such a big deal to test. Even after a few weeks on a gluten free diet they would have to wait over a month for him to get back on gluten diet.

Celiac is actually an intestinal disease (small intestines), not stomach. It is something that is very serious as it not only makes you feel like you constantly have diarrhea, but also want to vomit. It deprives the body of nutrients and if you don't do anything about it it will shut down your digetive system and then eventually you will shut down.

I don't know exactly what the test for it is. DW has her test in 2 1/2 weeks. She is scheduled to be at the clinic for like 4 hours. She had the stomach test which was also a 4 hour visit and her stomach is fine. It empties fine, so apparently the issue is going to be in the intestine's which is the next part of the digestive process.

The symptoms in adults are a little different than in kids.

 

[LauraVV]

Just wondering if I'm missing something. Is the growth issue the only reason they're suspecting celiac? Could she be lactose intolerant?

http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-symptoms

http://www.magicfoundation.org/www/...ture--children-who-are-not-growing-norma.html

Has your child seen an endocrinologist? I'd think that'd be the first step for growth failure. They often take parental height and determine the expected adult height of a child (it's an average, and they give you a range). Did they do bone age?

http://www.emedicine.com/ped/TOPIC902.HTM

 

[Mommy2JulietJocelyn]

We go on Wednesday to the GI doctor.
Jocelyn does not have light colored poop. she actually is doing really well with potty training and just wore panties overnight last night with out any problems. we still have issues with pooping on the potty - she was holding it and wanted a diaper.
She developmentally is fine. speech is good, I do know her stature is small and know it will be - she follows my MIL side of family. Peds doctor even knows this. but only gaining a pound in a year at that age is a big deal. I am a RN in an emergency room. I don't take my kids to the doctor for very much. - 2 ear infections w/ 104 fevers, viral pharyngitis w/ 104.7 fever for 4 days- not eating or drinking much with no wet diapers greater than 10 hrs.
yes I know my child, and it is concerning to me, so we are going to hear what they say. Am I going to just do what the doctor wants me to do - i don't know - depends on what her impression is and what she recommends.
she drinks milk all the time - no vomiting/no stomach upset - untill recently - this past week she is telling me her tummy hurts but she is also been holding her poop and feels better after she finally goes. I have been putting benefiber in both daughters morning milk with carnation instant breakfast. It has made a difference with Juliet and poop & "accidents" - much easier for her to go and I think it has helped Jocelyn too since she started using the potty.
(sorry i am rambling) I am at work.

 

[GrumpyMom25]

I also have a son with DS, he just turned 9 last week and was diagnosed with Celiac Disease back in Nov. He has been followed by an endocrinologist since he was 3 due to hypothyroidism. It was through that dr. that we were encouraged to get him tested for Celiac due to poor weight gain. He does have a lot of other issues, didn't walk until he was 6 years old, is visually impaired, has reflux and is also on the Autistic Spectrum. He went for a blood draw which indicated that he could possibly have Celiac so then went for an upper endoscopy. If you're noticing a difference in your daughter when she is on the GF diet I'd discuss it with her dr. Before testing tho you do want to have her on a "normal diet" ... deleting the gluten from her diet before the testing would affect the results of the test.