Need Opinions

[weigesm]

Hi,

I am a relative newcomer, and would really like some experienced opinions and suggestions concerning my and my children's situation/symptoms.

I am a 29 year-old mother of 2 (27 month boy, Hayden; 10.5 month boy, Evan).

I'll start with my youngest son's situation.

Evan began having problem with weight gain after I started him on infant cereals and other solids (at around 6 months). at 10 months, he weighed 16, 12oz. I think he may have gained 4 oz in the last few weeks. He has vomited after rice, oat, barley cereal, pears, bananas, cheerios. He has since eated bread (organic with few ingredients and other table foods with no side effects. He doesn't eat large quantities of anything, but in spite of increasing his intake of table foods, he is gaining very little weight. He has had a blood test for celiac disease, neg, but it revealed selective IgA deficiency. He was also negative for parasites and Cystic Fibrosis. He is breastfed in addition to receiving solids. We visit the GI ped in two weeks for a checkup/weight check, but I have a scale at home and he is gaining, if at all, very slowly. Otherwise, he seems perfectly healthy and is meeting his milestones. However, he still does not have a single tooth and he has eczema.

Hayden (27 months), also experienced poor weight gain between 6 and 12 months, but both I and Ped attributed this to the fact that I became pregnant when he was aroung 8 months or so old. He was an incredibly attached bf baby, so I continued to bf and supplemented with extra solids. He only weighed 17 1/2 pounds at 1 year old. He currently weighs 24 pounds, 12 ounces. He is 33 inches tall. He does not have much hair, in my opinion, and was also a late teether (9. 5 months). He also has eczema, and also vomited after a couple of fruits when he started solids, but is otherwise developing normally by dr's standards.

We eat a healthy, well-rounded diet consisting of practically only "whole" foods, but I feel like their growth is not what it should be at this point.

I am small, and have become thinner after my last pregnancy (weight gain, in spite of a more than appropriate calorie intake, was also kind of low for my last pregnancy). The pounds that I did gain during pregnancy dropped off very quickly. Currently, I am 112 and 5'3".I have bone aches (mainly in my hands and feet), and I do use the restroom relatively frequently, but feel otherwise healthy considering that I have two small kids to keep up with There is no known history of celiac in my family, but some info I have dragged out of my mom has made me suspicious. I can explain that later if it would help.

I am considering getting tested myself before we do further testing on my son. Maybe they are just petite little boys (as everyone in my family keeps insisting. They think they are adorable and healthy and "cute"-the latter partially because they are small), but I don't want to assume that and ignore the posibility of celiac.

Given my and their histories, am I overreacting in thinking that celiac is a real possibility for all three of us? What do you think? Is it possible that my breastmilk is not good enough in addition to solids? I KNOW that I am not pregnant, so it seems to me that my milk should be fine. I am supplementing with baby drinkable yogurt to encourage as much extra fat/calorie intake as possible.

Please give me any advice/comments/etc. !! Any info is welcome!!

Susie

[Carriefaith]

Welcome,

I don't think you are over-reacting at all, I think you are doing the right thing.

I think you all should definately get tested for celiac and maybe your son Evan could get a biopsy since IgA deficiency can result in false-negative celiac blood tests.

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"Immunoglobulin A (IgA) deficiency occurs more frequently in patients with celiac disease (celiac disease) than in the general population and can lead to false-negative results in the best serologic test for celiac disease, endomysial IgA (EMA)".

However, if you plan on getting celiac blood tests and biopsies, don't start the gluten free diet. If you are on the gluten free diet and get tested you can get false negative results.

In the meantime, maybe try cutting out lactose in your diets. Lactose intolerance is very common in celiacs and it may give you some relief until you can get tests done. If dairy products are a staple in your diets try lactaid. LACTAID Ultra caplets, LACTAID Original strength and LACTAID drops are gluten free.

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Good luck! and keep us posted!

[Guest ajlauer]

I hope I remember everything I wanted to say...

First off, get them checked for food allergies. When they vomit after certain foods, that's a HUGE giveaway!! That's how I figured out Melanie was allergic to eggs. Last December I had kids vomiting on a daily basis!! There was such a laundry backlog, I still haven't caught up with it all! When I started Maryann on baby cereals, she threw up immediately after the first bite of oatmeal. I called the dr, they said "don't give it to her anymore. she's allergic to oatmeal!" Okay, simple enough!

I think Maryann was about 16 pounds at 10 months - so that isn't personally alarming to me. I remember that with all my kids (and my friends kids)... the carseat became forward facing at one year, although the kids were NOT yet 20 pounds. You know, it's supposed to be one year AND 20 lbs... but we all read it as "... OR 20 pounds". hehe.

As for the teeth, some kids take forever. It took Nathan 2 years to get a piece of hair. I remember when he was 2 we were at the grocery store. There was another kid, his size (and at least close to his age) who had a COMPLETE head of hair - but not a single tooth! I believe the longer the teeth stay in the gums, the healthier and stronger they end up being. So that's a good thing (from what I know, anyways).

Finally, I hope you find some comfort in this.... my youngest was 18 lbs on her first bday. She just had a growth spurt the last few weeks and is now 21 lbs (it was quite a spurt!) Melanie will be 4 in June, and she just finally broke 29lbs. She's 29lbs, 1 ounce. So of course, me being a woman, there's a formula that goes along with that. She was wearing clothes when they weighed her... her hair is long... and she probably needed to take a dump. So in all actuality, she isn't really 29 pounds yet.

If you're looking for a suggestion (this is what *I* fall back on)... it's not good for kids if their parents are stressed out and worried about them. So if you think something is wrong, you need to have them checked out for it! It's not *just* for your own piece of mind! And if something is wrong, always better to find out early!

Oh on that note, I remember something else... In the celiac.com update email I got today, there was some study that showed celiac disease testing isn't accurate in children until they're 2 to 3 years old. So with Hayden, you could start the celiac disease testing. With Evan, I'd see if food allergy testing can be done now. It can also be helpful (although tedious) to keep a log of what he eats, and how he reacts. If no tests can be done until he's 2, then go that route. Just try your best to figure out, and then avoid what he can't tolerate.

Finally, *hugs* Hope this helps!

[KaitiUSA]

In the meantime, maybe try cutting out lactose in your diets. Lactose intolerance is very common in celiacs and it may give you some relief until you can get tests done. If dairy products are a staple in your diets try lactaid. LACTAID Ultra caplets, LACTAID Original strength and LACTAID drops are gluten free.

Or you can try digestive enzymes, they helped me alot. With celiac it is common to have lactose intolerance until your intestines heal. I was lactose intolerant on and off my whole life and when I went gluten free it got better and I can eat it now.

Yogurt is a good thing for your child. Yogurt is usually ok for lactose intolerant people because it contains an enzyme called lactase which breaks down lactose. The yogurts with live cultures are the best kinds to get

[jmj0803]

Susie-

This is from my own experience. My daughter was always petite and at 6 1/2 years old weighs 33 lbs and is 41 inches tall. From about 6 months she would always have loose bowel movements and vomit after eating. At 18 months they tested her for celiac via the blood panel and stool and it came back negative.At 3 years old they tested again, it was still negative on both tests. She did not have a positive blood or stool test until January of this year. In Febuary they did a biopsy and she is a confirmed celiac. I asked visit after visit about celiac.( I was the crazy mom who thought she new it all!) When my daughter developed Hypothyroidism it was her endocrinoligist who diagnosed her via Blood Panel with celiac disease. I really believe it matters what lab your sons test go to. I know the lab our Endo. used was out of California. The one our pedi used was Quest.

As a mother you know when something is just not right. Talk to your pedi about the labs he/she will be using. Express your concerns firmly I told my daughter's GI point plank " I know something is wrong, if you don't want to find out what it is then I will go somewhere else". That day she was diagnosed with Hypothyroidism, via the blood tests he ordered, and we were referred to a Endocrinoligist.

Take note of all the symptoms your son/s may have and let the doctor know. If it's not celiac disease maybe having a list in front of him/her might help.

some celiac disease symptoms:

dark circles around the eyes

vomiting

loose stool

gas

bloated stomach

short stature

low weight gain

muscle aches

very dry skin

Don't let them tell you they are going to be petite boys. Have them prove they will be petite. Ask for a bone age test.(It's an x-ray of your left hand) My daughters came back at 3yrs she was 6yrs 4 months at the time. I wish I had asked for this sooner. We would have definitely known something was wrong. Hope this helps!

[weigesm]

Thank you all so much for your incredibly helpful and knowledgable responses!

This is another somewhat lengthy e-mail, but I feel the need to vent about the medical care in our area. If you have some patience/time, here it goes . . .

I actually ordered an enterolab test for myself yesterday morning, so hopefully I will get some answers for myself soon. For some reason, I dread putting Evan through a biopsy, so I thought if my own test revealed gluten intolerance, then we could just all go Gluten Free and see how our bodies react. In the meantime, we are all consuming gluten in the hopes of keeping any test we might take as authentic as possible.

I have been concerned about allergies (food and environmental) since Hayden started showing his first signs of eczema and I started researching its causes. I originally thought he was allergic to wheat and possibly eggs, but my pediatrician insisted that the delayed skin reactions couldn't possibly be the result of food allergy. (he would break out in eczema a day or so later). I know he was wrong about that. Unfortunately we live in Alabama, and practically every doctor here is the product of the same training: UAB medical school. My own brother went there, and its not that there is anything at all wrong with the school, but I do strongly believe that their pediatricians are poorly educated when it comes to food allergies. I know this is true for med schools in other areas as well. That said, I have taken the food allergy issue into my own hands as well. As soon as we discovered that Evan was experiencing the very same problems that Hayden had experienced, I made appointments for both of them with a Duke-based pediatric allergy/asthma group that specialized in eczema-related food allergies. We will go there May 4th. Hopefully we will get some answers there as well.

Ajlauer, I think its great that your ped immediately said "she's allergic to oatmeal;don't feed it to her anymore!" At least they gave a confident and correct answer. After my children have vomited, these are the comments I have received from 3 well-respected pediatricians in our area . . . "It didn't agree with him. Try it again in two weeks" (bananas), "It just upset his stomach. Give him a couple of weeks and try again" (peaches), "Evan has a stomach virus, if the vomiting doesn't stop in the next 24 hours, or if his condition worsens, call me back" (Gerber Rice Cereal). The last comment came after I explained that this is exactly the same senario that I experience with Hayden after he ate bananas and peaches. She still said she thought he had a virus. CRAZY!! Which lab did the tests for Nathan, Melanie and Maryanne? Do they all have GI and Allergists?

I know what you mean about LAUNDRY. you should see the pile on my living room couch waiting to be folded, not to mention the pile waiting to be washed. On top of everything, we are adding on to our home and are currently all sleeping in the same room, waiting eagerly for our new laudry room and bedroom to be finished. For a while, it seemed like Evan would deliberatley vomit everytime I put fresh sheets on the beds!!

We are also planning to break the 20 lbs and 1 yr rule. We broke it with Hayden, and I'm sure we'll do it with Evan too. My ped (interestingly) said I should face Evan to the front at 1 year regardless of age.

Jessica, I'm glad you finally have some answers, and am sorry that it took so long for a + test. Is your daughter showing some signs of improvement?

Katie and Carrie, thanks for your helpful information and encouragement. I will be sure to keep everyone posted. I hope I didn't leave anyone out!!

Susie

[Guest ajlauer]

Hey Susie!

Right now the kids have a very good group of regular doctors, and then Nathan and Melanie have a mediocre allergist. Maryann hasn't been tested for anything yet. I think she's just too young. She also still has that buddha belly... so she looks healthy! I don't know what lab they used for the tests. I'm waiting for Melanie's results to come back for celiac disease, so right now there's no GI involved. Trying to get myself an appt with the GI, but they don't even want to answer their phone! I went gluten-free yesterday. My headaches are already better, and I'm not screaming at everyone as much. Didn't think I'd notice any difference this soon though, so it's probably just a coincidence.