Having My Son Evaluated For Celiac Disease

[mamaesq]

My oldest son will be 4 in November. He has always been rather small. He went to the doctor last month for a sinus infection and when he was weighed, he weighted 31.7 lbs. At his appointment the pediatrician and I talked about how small he was and we agreed that he probably drinks too much milk, so I really made a concerted effort to watch his milk intake hoping to increase his appetite.

Last weekend, I decided that I wanted to try South Beach, and I read an article about how SB improves celiac disease. My first thought was, of course, if you aren't eating carbs, you aren't getting gluten. Then I read more about the symptoms of celiac disease and realized that I had most of them. I have always had excessive stinky gas, extremely uncomfortable bloating (to the point of having to unbutton my pants, I mostly live in sweats when I am not working), floating stools that are frequently greasy, major indigestion, acid reflux, loss of enamel on teeth (a big chunk of my tooth fell off while I was talking on the phone a couple of weeks ago and I had to have it fixed), canker sores, irritability and moodiness, etc. I'm a real treat to be around. I went on the Atkins diet in 2003 before I had kids and not only did I lose 15 lbs, I felt amazing...better than I ever had. The bloating was gone, I just felt wonderful. I allowed myself a couple of cheat days and I felt absolutely horrible when I did. Then my husband and I went on a cruise and bought a house within the span of a month. I gradually went off the diet completely, and the symptoms returned.

Then I read the symptoms in children and realized that my son had most of them too, slow weight gain, distended belly, canker sores, loss of appetite, irratibility, amazing and beautiful eyelashes (who knew?), pale (yellowish tan, never brown) maloderous stools, constipation, etc. His stools hit the toilet like a brick when he goes. They seem very dense. He did have an episode of diarrhea a couple of weeks ago that looked very greasy. He and I both have asthma.

I talked to my mom about all of this and she and I realized that we should probably be tested because she and I both have horrific digestive issues, so she talked to a gastroenterologist friend of hers about us, and he ordered blood work and genetic testing. We had it done yesterday and it was sent to Prometheus in San Diego. In the meantime, I called the pediatrician and got my son in to be seen yesterday.

I was very disappointed by the appointment. I felt like the pediatrician brushed me off. I explained how I was concerned, why I was concerned, and how he has all these symptoms, and how my mom and I do too and we are being tested. He said that kids with celiac disease tend to fall off the charts on weight and he hasn't (he went from being almost in the 50% last year to around the 10% now). When he was weighed yesterday, he was weighed fully clothed, with shoes on, and weighed 32.9. He said that he gained a pound since last month. I said it wasn't accurate because of his clothes. Then he fixated on the fact that he was 28 lbs in September 2007 and how he has gained the recommended 4 lbs in a year. That's fine and good, but he weighed 30.4 at his 3 year appointment in November, which means that in almost 11 months, he has gained 1.3 lbs. I took him back to my dad's office (he's a general surgeon) after the appointment, stripped him down, weighed him, and he still weighed 31.7 lbs.

My dad decided that we needed a second opinion, because he thinks that there is something to this, so he called and was able to make an appointment for my son with Dr. Fasano at University of Maryland. We go on Tuesday.

Now I am convincing myself that I am completely overreacting and that I am just looking for something to be wrong. In all honesty, I hope that we get answers. My mom and I expect our bloodwork back next week. My husband thinks I am overreacting. We are both very short, so it makes sense that our children would be small, but I would still expect consistent weight gain, and that's not happening.

When my son was 18 months, he was 22.7 lbs. At 2 years, he was 24.7, At 3 years, he was 30.4. In two years he's only gained 7 lbs. He should gain that in a year. In contrast, my youngest son is now 2. At every appointment, he was within an ounce of my oldest, except at his two year appointment, he weighed a full 2 lbs more. He was weighed the other day and is 29 lbs. My children are 20 months apart, they should be more than 2 lbs apart at this age.

As an aside, my maternal grandfather has always had significant digestive issues too, and he now has pancreatic adenocarcinoma. He is very lucky that it hasn't spread, that chemo has been effective to this point, and that at 10 months post diagnosis he is still alive.

Do you think there is something to this? Do you think I'm overreacting? We have four generations of digestive issues that mirror celiac disease.

[CeliacMom2008]

Here's the great news - Dr. Fasano is supposed to be one of the top Celiac doctors in the country. So I would rest easy knowing that you're in with the best.

Are you overreacting? Absolutely not.

The weight issue - my son was in the 90-95th percentile for height and weight for 8.5 years. Now I'm 6' and my hubby is 6' 2". So he should've been tall. This worked greatly against us. When I'd question doctors about his digestive issues I was repeatedly told he eats a lot of fruits and veggies and he's tall - quit worrying. HA! I'm guessing he was supposed to be more like the 98-99th percentile if he'd been getting nutrition from all those fruits and veggies.

Our ped GI told us Promethius was a really good lab to use, so again, I think you should be comfortable with that.

Now it's just the waiting game. If any of your tests come back positive, please return and let us know how we can help you and your family adjust to the new lifestyle.

Good luck with the appt. Tuesday!

[Amyleigh0007]

My son's main symptom was slow growth. He gained 1 pound in one year (March 07-March 08). In March, when he was dx, he had just turned 8 and weighed 41 pounds. My husband and I are both small and for years and years everytime I would bring up my worries about my son's weight and height she would brush me off saying he has small parents (she actually did test him for Celiac when he was around 3 and it was negative). But, this time I insisted on more testing. I am so glad I did. Not only did the Celiac panel come back positive but he has many food allergies. Trust your gut feeling.

[happygirl]

I don't think you are overreacting when you are being proactive about you and your family's health, especially when you realized the ped GI you saw was going by the 'old thoughts' on Celiac in children.

Now that you know what you know about Celiac, its proactive to be tested for it. This way, regardless of the results, you will know. The answer will be a piece of the puzzle (Celiac or the need to pursue other options).

Good luck, and keep us updated. Dr. Fasano is a leading Celiac researcher and pediatrician - you are in great hands to have your son properly evaluated.

[mamaesq]

We saw Dr. Fasano today and the appointment went well. He wants to try to treat the constipation and wait for my test results before proceeding with the celiac testing. He wants to see us back in two months, to monitor his growth and to see if the symptoms improve with the miralax. He said that his symptoms are certainly suspicious, and I was glad that he understood my concern. So, I don't have answers yet, but at least we are being taken seriously. Dr. Fasano was great with my son, he really got him out of his shell!

[The Kids Folks]

My oldest son will be 4 in November. He has always been rather small. He went to the doctor last month for a sinus infection and when he was weighed, he weighted 31.7 lbs. At his appointment the pediatrician and I talked about how small he was and we agreed that he probably drinks too much milk, so I really made a concerted effort to watch his milk intake hoping to increase his appetite.

Last weekend, I decided that I wanted to try South Beach, and I read an article about how SB improves celiac disease. My first thought was, of course, if you aren't eating carbs, you aren't getting gluten. Then I read more about the symptoms of celiac disease and realized that I had most of them. I have always had excessive stinky gas, extremely uncomfortable bloating (to the point of having to unbutton my pants, I mostly live in sweats when I am not working), floating stools that are frequently greasy, major indigestion, acid reflux, loss of enamel on teeth (a big chunk of my tooth fell off while I was talking on the phone a couple of weeks ago and I had to have it fixed), canker sores, irritability and moodiness, etc. I'm a real treat to be around. I went on the Atkins diet in 2003 before I had kids and not only did I lose 15 lbs, I felt amazing...better than I ever had. The bloating was gone, I just felt wonderful. I allowed myself a couple of cheat days and I felt absolutely horrible when I did. Then my husband and I went on a cruise and bought a house within the span of a month. I gradually went off the diet completely, and the symptoms returned.

Then I read the symptoms in children and realized that my son had most of them too, slow weight gain, distended belly, canker sores, loss of appetite, irratibility, amazing and beautiful eyelashes (who knew?), pale (yellowish tan, never brown) maloderous stools, constipation, etc. His stools hit the toilet like a brick when he goes. They seem very dense. He did have an episode of diarrhea a couple of weeks ago that looked very greasy. He and I both have asthma.

I talked to my mom about all of this and she and I realized that we should probably be tested because she and I both have horrific digestive issues, so she talked to a gastroenterologist friend of hers about us, and he ordered blood work and genetic testing. We had it done yesterday and it was sent to Prometheus in San Diego. In the meantime, I called the pediatrician and got my son in to be seen yesterday.

I was very disappointed by the appointment. I felt like the pediatrician brushed me off. I explained how I was concerned, why I was concerned, and how he has all these symptoms, and how my mom and I do too and we are being tested. He said that kids with celiac disease tend to fall off the charts on weight and he hasn't (he went from being almost in the 50% last year to around the 10% now). When he was weighed yesterday, he was weighed fully clothed, with shoes on, and weighed 32.9. He said that he gained a pound since last month. I said it wasn't accurate because of his clothes. Then he fixated on the fact that he was 28 lbs in September 2007 and how he has gained the recommended 4 lbs in a year. That's fine and good, but he weighed 30.4 at his 3 year appointment in November, which means that in almost 11 months, he has gained 1.3 lbs. I took him back to my dad's office (he's a general surgeon) after the appointment, stripped him down, weighed him, and he still weighed 31.7 lbs.

My dad decided that we needed a second opinion, because he thinks that there is something to this, so he called and was able to make an appointment for my son with Dr. Fasano at University of Maryland. We go on Tuesday.

Now I am convincing myself that I am completely overreacting and that I am just looking for something to be wrong. In all honesty, I hope that we get answers. My mom and I expect our bloodwork back next week. My husband thinks I am overreacting. We are both very short, so it makes sense that our children would be small, but I would still expect consistent weight gain, and that's not happening.

When my son was 18 months, he was 22.7 lbs. At 2 years, he was 24.7, At 3 years, he was 30.4. In two years he's only gained 7 lbs. He should gain that in a year. In contrast, my youngest son is now 2. At every appointment, he was within an ounce of my oldest, except at his two year appointment, he weighed a full 2 lbs more. He was weighed the other day and is 29 lbs. My children are 20 months apart, they should be more than 2 lbs apart at this age.

As an aside, my maternal grandfather has always had significant digestive issues too, and he now has pancreatic adenocarcinoma. He is very lucky that it hasn't spread, that chemo has been effective to this point, and that at 10 months post diagnosis he is still alive.

Do you think there is something to this? Do you think I'm overreacting? We have four generations of digestive issues that mirror celiac disease.

Hi- I am obviously new to this board and this site as I was having diffiulty figuring out where to reply. My son is going through a similar situation. When he was born he weighed in at almost 9lbs, by 3 months he was FTT . We got that taken care of, but he then started having bowel issues (constipation) by age 2. He tends to be extremely gassy and constipated all the time. He currently is on Benefiber and Miralax. We have had to do enema's in the past. He is now age 7 and just had a bone age scan which shows him at 5 yrs 9 mo. He has almost fallen off the growth chart - below the 3%. I am only 4"11 - so not much was done as "the apple doesn't fall far from the tree". He has now had 2 blood tests for celiac disease and a cystic fibrosis test. All have come back negative. He just met with a ped GI who is interested in testing his stool and looking at treating the symptoms of constipation and gas. He said that he won't rule out celiac disease but wants to try this other stuff first. How long should we be trying this other stuff, before I push to either try the glutenfree diet or have the scope done? DH and I have not yet been tested but have a pretty good guess that we will all come back positive due to numerous gastro issues, IBS - me, diviticulitis him, gerd and reflux our 4 y/o daughter. Even our extended family has gastro issue, crohn, colin cancer, esphogeal cancer. I have also had 2 misscarriages and infertility issues. When I first found this site and looked at the list of symptoms - I just kept checking each one off - yep we have that, yep we have that one too!

[blindconfusion8]

I also am currently undiagnosed, but only medically... i am sure I have this disease... when my now three year old son was born i suffered greatly from depression, and can now look back at the timing of many other symptoms starting at the same time. I don't suffer from major stomach problems, but almost have every other symptom on the lost... (i ate pasta for dinner, and have a canker sour on my tongue already!) this is all really now to us, i went to the gastroenterolgist yesterday for my sons blood work follow up (which by the way was negative). My husband went online last night, and shared the adult symptoms with me... which is a little scary...

my son, does not suffer for weight gain issues though. he turned 3 on may 14th, and weighs 39.4 lbs... (he's HUGE!) but i almost wonder if there is a strain of this disease that would also cause hyper growth. he was born at 7lbs 13oz, and by seven weeks (breast milk only) was nearly 15lbs. he out grew his infant car seat (by length) by the time he was two and a half months old...

i am sorry that your ped. was a bone head... if this is your first child, let me tell you that you are the only perosn that is ever going to stick up for that child medically. I have been told so many times that my concerns are because i was a first time mom... BULL!!! (i now have three kids, and am quite opinionated!) when my first son was two i asked my dr. a car seat question, that i already knew the answer to, and his was wrong... (i switched dr.'s!) things like car seats, should be common knowledge to children's dr.s in my eyes!!!

ANYWAY!!! hang in there... this is a paved road, even if getting onto it seems hard... you can make it...

one question- does you son have swollen lymph nodes? groin, neck, back of the head, or anywhere else? My son does, and I was told that it is normal, but searching this forum i have found a few others whose children also have them, i am trying to find out if this is coincidental, or if maybe not... i hope i have not come across as too forward... i am just a mom on a mission...

peace to you and your family,

--Amy

also, encourage your mother to go gluten free, is could save her life!

[blindconfusion8]

i would love to share my thoughts with you...

my son is three, and not fully diagnosed, at least not in the medical world... in my eyes, he and i both have celiac...

i suggest going gluten free NOW. there is no harm, and if everything continues to show no positive results, you know that you took the measures to help him... (would you leave a splinter in his hand until it got infected?) (me either)...

I know, again, through personal understanding, i alsi have celiac. as a matter of fact, i was a carrier, and only got it when he was born.

we just started our testing process. his blood work came back negative... but our dr. wants to do a biopsy... i am all for it, and i am actually going to have one myself. I am worried for my son, but i know that his care is in my hands, and i will do what i need to for him...

also, make sure you reads up on the long term effects of this disease... they include, diabetes, thyroid disease, liver disease, arthritis, addison's disease, and sjogren's disease... these alone are enough to make me not want to ever eat gluten again...

good luck to you...

[mamaesq]

My mom and I got our blood results back today and both of us tested positive, so our gastroenterologist went ahead and put us on the gluten free diet. He said that we didn't need an endoscopy because as far as he is concerned, we have it. I'm ok with that, quite frankly, I'm not too excited about the idea of having an endoscopy anyway. My mom feels so relieved that finally, there is a reason why she's been feeling the way she has. She is embracing the gluten-free way of life wholeheartedly...me? I sobbed for 20 minutes and daydreamed about eating a giant cheesesteak.

So, based on our results, I left messages for the pediatrician and Dr. Fasano. Now, our pediatrician has ordered bloodwork for my son, and I am waiting to hear back from Dr. Fasano to see if anything will change on his end.

I went to the grocery store at lunch and was completely overwhelmed. I got 4 cans of Dinty Moore Beef Stew because I know that's gluten-free. I need to figure out how to expand my horizons.

My son does have one swollen gland in his neck, but we believe that it's because he suffered from ear infections so much as a baby, who knows? That is interesting...

The Kids Folk- has your son had genetic testing as part of the bloodwork?

[mamaesq]

Well, my son's bloodwork all came back negative, but we're still dealing with the same issues as before. Dr. Fasano said to just watch him and to reevaluate him as he gets older.

The pediatrician saw him yesterday for a 6 month weight check, and he's gained a little over a pound. He wanted my son to weigh 35 pounds by now, but he's still below 34. We discussed the fact that his bloodwork was negative, but with my diagnosis, he thought it would be a good idea to try a gluten free diet for a month or two to see how it goes.

It's been pretty easy to put myself on a gluten-free diet, but I have no idea how to put a 4.5 year old on one! He lives on chicken nuggets and cereal bars!!

[lizajane]

Well, my son's bloodwork all came back negative, but we're still dealing with the same issues as before. Dr. Fasano said to just watch him and to reevaluate him as he gets older.

The pediatrician saw him yesterday for a 6 month weight check, and he's gained a little over a pound. He wanted my son to weigh 35 pounds by now, but he's still below 34. We discussed the fact that his bloodwork was negative, but with my diagnosis, he thought it would be a good idea to try a gluten free diet for a month or two to see how it goes.

It's been pretty easy to put myself on a gluten-free diet, but I have no idea how to put a 4.5 year old on one! He lives on chicken nuggets and cereal bars!!

my blood work was also negative- my endoscopy showed the celiac. my son had negative blood work years ago, but he has become a whole new person now that he is gluten free. i did not retest him because i had the proof i needed that gluten hurts him. he is not "small" he is average- 50th percentile. but while my older son was born 9.5lbs, his lowest weight percentile was 50th at 6 months and he went STRAIGHT back up to over 75 and then back to 95 by the time he was 12-18 months old. he is one of the top 3-5 tallest kids in his entire kindergarten. his height has not been on the chart for years, only just made it back on at 97th percentile. my younger son- the one who is now gluten free- hit 50th percentile at 6 months and then never went back up. he became extremely irritable at about age 2 and stayed that way until he went gluten free. he is one of the smallest kids in his class, even though he is one of the oldest. he is the smallest child in my family history for as long as we can remember! we were ALL 95th percentile kids- i was the 2nd tallest child in my entire kindergarten. my husband is 6ft 2 in and i am 5ft 8 in. so while yes, my kid is "average" sized, he is VERY small for our family and looks much, much younger than his brother. Edited to add- my gluten free son is 4.5 years and my older son is 6.

as for the diet... at chick fil a, i get a chicken fillet (gluten free) and cut it up like nuggets so he can dip it in ketchup. the fries are from a dedicated fryer, so also gluten free. at home, you can buy gluten free chicken nuggets. he eats sandwich meat without bread. cheese sticks. rice pasta. rice pasta mac and cheese. cheeseburgers without a bun. lots of fruit. and i keep a box of gluten free animal crackers, cereal bars and cookies for when we need something to grab on the go or for when other kids are getting something like them and i want him to have an option. (the cereal bars are REALLY expensive! ack! i try to hide them... but the kids found them this time and devoured them!)

it is much easier than you would think. especially because there are a LOT of gluten free candy options... ha ha ha!

[Genna'smom]

Stacey

I know it is difficult but it is easier than you think. There are a lot of product out there that are regular items that kids can have. Chicken nuggets are one thing Ihave not found a good one that my just turned 3 yr old likes. BUT she has learned to loved broiled fish and grilled chicken. As for cereal bars I make my own out of butter, marshmellows and she has 3 favorite cereals that are gluten free (honey nut chex, fruity pebbles and cocoa pebbles) and I freeze these and keep them around. Also she likes Pamela's pancake mix and so does the rest of my house so I make up a batch and freeze them.... I also found great gluten free ice cream cones at our local tops so now if we go out for ice cream I take one and my local dairy will fill the cone for me for free... How nice they are. And I make her Tinkyada Pasta. I can find all of these at either our local TOPS or Walmart.....

Hang in there it is tough to begin with but it gets easier. We are still fighting issues with her but at least she has grown some. She had dropped down to 18lbs at 2 yrs old and is now up to 26 lbs but with the use of a feeding tube as she stopped eating and drinking altogether...... We are still questioning her Celiac and will do a challenge when sheis 4 and hopefully bigger and stronger and all her tests were negative...

Bonnie

[mamaesq]

We're a week into the gluten free diet. I took him to see my gastroenterologist and he ordered the genetic test (finally!) so we should have those results in a week. He's also having a complete stool analysis because the doctor thinks there is malabortption of some sort going on, even though his bloodwork has been negative for celiac thus far. He had an x-ray of his bowels which showed that he does have some fecal impaction. (I am frustrated that none of this was done 9 months ago when we were at the Celiac Center and at the trips to the pediatrician).

I just made dinner for the boys, I made a chicken breast sauteed in italian herbs and olive oil, broccoli, and Tinkyada macaroni with a homemade cheese sauce. (That sounds good mixed up into a skillet meal too!) Both of them tore it up! He's on his second helping of the mac and cheese. His second helping! He never asks for more food!!!

I made 1 2 3 gluten free mini chocolate chip muffins and he's been eating them for breakfast. They were really easy and he loves them. I haven't made him Pamela's pancakes yet, but I know he'll love them. The first time I ate them I almost cried because they tasted so normal. He already likes Pamela's chocolate cake. I failed at my first attempt to bake bread (the middle wasn't done), but the part that was done tasted good and he liked it too. It's amazing what I am willing to go without, but when it comes to him, I'll move mountains to make what he wants! He also loves the Chex cereals, especially chocolate!

I think my son is starting to look better, he seems to have better color to him and the dark circles under his eyes seem to be disappearing. While he still fights with his almost 3 year old brother on a minute by minute basis, he is much more pleasant to be around. He hasn't had a non-brother related temper tantrum in a couple of days! I think this is working!! I am anxious to weigh him, but I want to give it another week or so before I put him on the scale.

[Nicholasmommy]

just to let you know you can make home made chicken nuggets pretty easily. Look it up online! Oh, go with your gut mama, you are not wrong!

[cyberprof]

We're a week into the gluten free diet. I took him to see my gastroenterologist and he ordered the genetic test (finally!) so we should have those results in a week. He's also having a complete stool analysis because the doctor thinks there is malabortption of some sort going on, even though his bloodwork has been negative for celiac thus far. He had an x-ray of his bowels which showed that he does have some fecal impaction. (I am frustrated that none of this was done 9 months ago when we were at the Celiac Center and at the trips to the pediatrician).

I just made dinner for the boys, I made a chicken breast sauteed in italian herbs and olive oil, broccoli, and Tinkyada macaroni with a homemade cheese sauce. (That sounds good mixed up into a skillet meal too!) Both of them tore it up! He's on his second helping of the mac and cheese. His second helping! He never asks for more food!!!

I made 1 2 3 gluten free mini chocolate chip muffins and he's been eating them for breakfast. They were really easy and he loves them. I haven't made him Pamela's pancakes yet, but I know he'll love them. The first time I ate them I almost cried because they tasted so normal. He already likes Pamela's chocolate cake. I failed at my first attempt to bake bread (the middle wasn't done), but the part that was done tasted good and he liked it too. It's amazing what I am willing to go without, but when it comes to him, I'll move mountains to make what he wants! He also loves the Chex cereals, especially chocolate!

I think my son is starting to look better, he seems to have better color to him and the dark circles under his eyes seem to be disappearing. While he still fights with his almost 3 year old brother on a minute by minute basis, he is much more pleasant to be around. He hasn't had a non-brother related temper tantrum in a couple of days! I think this is working!! I am anxious to weigh him, but I want to give it another week or so before I put him on the scale.

Good for you! I remember when you posed your first post last year and mentioned getting your son tested. I'm glad he looks better.

My son is growing faster now, but still not gaining weight, only 105 pounds. He's 16 and is 5'8" so not as short as he used to be, but he still looks young. Instead of people saying "Are you 12 years old?" they say "Are you 13 or 14?" which makes him very mad.

I remember the first week after he went gluten-free/CF, I asked him how he felt and he said that he didn't realize that eating wasn't supposed to hurt!!! Can you imagine? My momma heart hurt when he said that...hurting after eating all his childhood and I didn't know.