Possible Celiac- 4 Year Old

[kennessee]

Hi! We've been dealing with weight and eating issues with my son his whole life. He had pyloric stenosis as a baby that was misdiagnosed as reflux. By the time the dr's figured it out, he was already 2 months old and hadn't gained any weight since birth. After the surgery, he still gained incredibly slowly. Showed no interest in eating whatsoever. I figured it was because he spent those first 2 months non-stop projectile vomiting 3-4x a day. Who would want to eat after that? Pedi said put cereal in his bottle. I figured things would get better when we started solids, nope. He would only eat fruits and veggies. He was labeled failure to thrive. Weighed 16lbs at 12 months. The eating problems continued all through out his life. I didn't know what was wrong. His dad is 6' and 165. I'm barely 5'1 and 110. I figured he was destined to be a skinny child. Blood tests came back fine. We were sent to a GI who didn't do any tests and basically said he would be skinny because my husband and I were.

Well, now my son will be turning 5 in April and he is 33 lbs and 41in tall. My 3 yr old is a little on the short side... I think 36 in and he has started to slow on weight gain too. He's 29-30lbs. Our new pediatrician has tried my 4 year old on appetite stimulants which does make him eat but even with the help of those, he has only gained 1 lb this month. I asked the pedi about food allergies twice now and he seems to just brush me off every time. We have an appt tomorrow and I'm just going to ask for a referral. Do I see a GI or Allergist if I want him tested for Celiac? Here's a list of "symptoms" that I notice in him. I understand that people with celiac disease all present different symptoms. His are:

-No appetite, I have to coerce him to eat at every meal. He doesn't even want snacks unless it's fruit or something.

-Low weight gain-"failure to thrive"

-He had eczema when he was an infant till about the age of 2. Now his calfs feel like sandpaper... kinda rough.

-Dark circles under his eyes sometimes

-Poops everyday sometimes 2-3 times a day. His poop is more loose than I would consider normal. It's not diarrhea but just mushy looking and like it breaks apart easily-floaty pieces, etc

-Constant, non stop clogged nose. Hard boogers. I can clean his nose out and it usually results in a nose bleed and the next morning it is clogged again. ( Could be due to adenoids though)

-Fights a lot with his brother. Very mouthy to me ( Could just be a kid thing..?)

- He doesn't sleep well. He still sleeps in my room. If I put him in his room, he wanders in my room and crawls into my bed. He is a mouth breather, snores, thrashes around, yells and talks in his sleep. He would cry in his sleep when he was an infant as well.

These may not all be symptoms of celiac disease, but these are all things that concern me about my son right now. My 3 year old is starting to be a picky eater right now but he shows an interest in eating still, unlike his older brother. I asked my 4 year old why he doesn't like to eat. He told me it hurts his throat. Tonight in bed, he told me he thought he had to puke and his stomach hurt. I hope my pediatrician gives me the referral. If anything, for my piece of mind that an allergy isn't causing his slow weight gain.

[Dixiebell]

Welcome to the forum kennessee.

If someone hasn't told you already, if he is not eating very much gluten containing foods, the tests for celiac can come back as normal. Did he ever have testing for celiac? Check his paperwork from then and see if any of these test are on there.

Celiac tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG

Make sure, if you haven't yet, to get his vitamin and mineral levels checked. If he is low or low normal, those can be symptoms too.

All of his symptoms can for sure be from celiac. Him only wanting to eat fruits and veggies could be because he knows what is making him sick.

His reg Dr. should be able to order these tests. My son's Dr. did, he just sent us to the children's hosp. to do it.

[kennessee]

I looked at his past blood results from when he was 10 months old. That's the only time they did a blood test on him. They tested a bunch of stuff like thyroid, CBC, complete metabolic. Everything was normal was what I was told but I looked last night and his Alk Phos was high and some other things like Crea were either high or low. Can't remember what the Crea was off the top of my head. They never once tested for food allergies. The reason I brought it up is because if he ate too much he would throw up especially after yogurt and milk. If he drank 8oz and had a bowl of yogurt with it, he would take off running to the bathroom. At first, I thought it was due to him just not wanting to eat so he would throw up to get out of it. Then my MIL told me my husband had a lactose intolerance as an infant. My husband still has a hard time gaining weight and usually has to go to the bathroom after eating certain things. The dr's definitely haven't tested for celiac or anything else. I don't know if there is family history of celiac or not. If anyone in the family has it, they obviously don't know. Dalan doesn't even like mac and cheese. Does that have gluten? He will eat other pastas but again, in small quantities. He also has pale skin and I thought maybe he was anemic or something. But, it's hard to know because looking back at pics of my husband he was a pale child as well. His mom said he would eat small quantities too and he was a small kid. My husband was 18lbs at 12 months. So if my son gained weight those first 2 months of his life, he probably would have been right where my husband was. It's incredibly frustrating not knowing why my son gains so slowly. These past couple months he's only gained like 1 1/2 lbs. And if he didn't have the appetite stimulant, he probably wouldn't have gained at all..

[Dixiebell]

Mainstream mac and chees does have gluten in it because of the noodles. Lactose intolerance can go hand in hand with celiac or gluten intolerance.

In my opinion, I would get the celiac testing done and vitamin levels and see what they say. In the mean time you could stop dairy and see if that helps. That would not scew the celiac testing. Stopping gluten could. If he is positive for celiac (you can post his numbers here if you want help with those) the Dr. might want to do an endoscopy to see if he has damage. If he is negative I think you should at the least try gluten-free and dairy free for three months and see if anything changes.

[kennessee]

Thank you, Dixiebell. We have his check up this afternoon and I'll be bringing up allergy testing for the 3rd time with his pediatrician. If he says no, guess I'll be looking for a new one which might take a month before my son is seen again. My husband is military so we have to change PCM's. Have it approved, etc. Would we need a referral to an allergist or a GI to test for Celiac? I want to make sure that I'm getting sent to the right place.

[Dixiebell]

No, his regular Dr. can order the tests. Just to be clear, celiac is not an allergy so allergy testing will not find it, it is an auto-immune disease.

I would take this list of tests with you and tell him you want them done. You might also want to mention that they have not found anything yet so why not test him for this.

Get the vitamin levels too to see if he is deficient is any. If he is not absorbing them then this can also be a symptom.

Celiac tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG

Don't forget to get copies of the test results so you can see for yourself.

[kennessee]

Well, his doctor gave me a referral to an ENT for my son's sleep issues. He said it sounds like sleep apnea and may need to have his adenoids and tonsils taken out. They took blood at the appt and are going to do a Celiac panel on it. At this point, I just want answers to why my son complains about his stomach hurting and doesn't want to eat a larger quantity of food. My 3 year old can out-eat him most days. The pediatrician isn't as concerned about his weight since he gained almost 3 lbs in a month when he was on an appetite stimulant. My issue with that is what is the plan when we take him off the stimulant and he continues to not have an appetite? I asked about lactose intolerance as well and he didn't order any testing for that. He said I could take out all dairy and give Lactaid milk,etc and see how my son does. My son hates dairy as it is anyway. Always had to force the kid to drink his milk. Hates yogurt, mac&cheese, pudding, ice cream, milkshakes, anything with milk or cheese in it. Anyway, the doctor said the results of the celiac panel would be in about 5-7 days. I will come back and update with the results. I am so thankful for this board and for the people who share the story of their kids and getting diagnosed with celiac disease.

[Dixiebell]

That sounds like a good start. I hope you can find some answers for his problems.

My son also complained of stomaches daily, among other things, and would not eat very much. After his Dr. sent us for celiac testing, I looked it up and ended up here. I read and read and read some more and knew this had to be his problem.

This is to be taken as advice only- before you consider surgery please at least try him on gluten-free for at least three months and see if it helps.

[Maiko]

Hi Kennessee,

We're military too. I have 4 kids and 3 have been diagnosed with celiac disease, just FYI, the insurance has covered everything. We're still having issues with my 3 year old, he's by far the sickest - has been from birth. IUGR, failure-to-thrive, etc. etc. When he was 15 mos old we finally had a diagnosis but he's not putting on weight like everyone said he would. At 3 years 3 mos he weighs 24#. I feel your pain and frustration.

Thankfully, we've had some great doctors so far.

I hope you get some questions answered, it's so hard to see your kids sick and not know how to help them.

[kennessee]

Maiko-

Thanks for replying. Out of curiosity, what branch is your husband in? Mine is Air Force. What were your children's symptoms that made you ask to get them tested? Were they all having symptoms or just your 3 year old? Your 3 year old sounds like my 4 year old. He was never diagnosed as having IUGR. He was born at 38 weeks and was 6lbs 5oz. My second son ( 3 now ) was born at 37 weeks and I went out and bought preemie clothes thinking he'd for sure be smaller than his brother.. nope. He was a whole pound bigger at 37 weeks. My 4 year old had pyloric stenosis and never gained anything the first 2months and sometimes I feel like he developed a food aversion because I'd feed him every hour-forcing him to get something in his body.

I kept him off of Dairy yesterday-besides a couple bites of scambled eggs that had milk in them. So bfast, he had 2 small sausage patties and that was all he wanted. Lunch he would only eat half a ham/cheese sandwich. Wouldn't eat anymore than that. He got his medicine ( appetite stimulant ) in the afternoon. He ate 8 chicken nuggets for dinner and had a half pb/j sandwich after that. His mood was awful yesterday-as it is right now as I'm writing this. He just finished breakfast an hour ago and it was a cheese danish. He had a lot of bread yesterday. Did anyone notice this kind of behavior when eating these foods all day? He threw a fit in the Walmart yesterday-which he never normally does. He fought with his brother all night last night and is now fighting again.