Does It Sound Like My 20 Month Old Could Have Celiac?

[TJ060306]

Well I hope I am writing this in the right spot, if not please let me know.

I am despret my daughter is almost 21 months has had chronic constpation since she was a newborn. She also doesn't like to eat, at all. To start off when my daughter was 3 weeks I saw a huge thing of bright blood, after trial and error she ended up on Neocate formula for a milk protien allergy. She also had rice ceral in her bottle for acid reflux. She was also medicated with previacid. She still was constapatied on the Neocate her GI told me to try milk of mag which if i was faithful in giving it to her it would make her poops not little pebbles. But I didnt and still dont agree having to give my daughter something to make her poops 'normal'. Her poops (sorry if TMI) have always been light pale brown little pebbles smushed into a ball. Sometimes just one hard ball. Now she goes everyday sometimes twice but it always still looks like that unless I give her Milk of Mag or Lactulose. Her poop smells awful like I know it isnt supossed to smell like roses but it is just foul not a norm poop smell. Sorry again if TMI. She also has had major gas issues as well. Ok now onto her not eating issues. Well she would always gag on stage 3 baby foods with chunks in it. She didnt put something in her month and eat/suck on it until her first birthday. This I know sounds like GERD, which she was taken off the prevacid at 11 months we thought she was doing fine. At the time I never thought that was what causing her not to eat. So she didnt eat untill 12 months she is now almost 21 months and she practically starves herself. Now shes not under weight because up until she got croup last week she had 18-24oz milk that kept her going. She now wont take her bottle therefore now she has lost a pound in 2 weeks and she still isnt eating. Which everyone(GI,Pedi,OT) all thought once the bottle was gone she would eat. Well shes not. She also has had server issues wiht her diaper area. She has evey kind of rash down there imaginable plus she was dianosged with excema and psorisis. She also gets sick all the time. She has had a cold/ear infection/cough/croup/runny nose thing going one since like the beginning of Oct. She seems to be getting over something then she comes down with something else. She is very pale, bags under her eyes and exshusted all the time now. She was dianosed boardline iron defeincy aneamia. Which the pedi said was from her drinking to much milk but when we cut back on the milk in Oct her iron went from 75 to 39. I would think if I was cutting back the milk the iron would either maintain or go up if it was from the calcium from the milk not get lower. She is also a wreck when she is hungry, but she still doesnt eat. She is angry and agressive just not normal toddler anger when she has these 'meltdowns'. She is going for a endoscopy next week because of the not eating but her pedi and GI both think there isnt anything wrong. They think it is just normal toddler behaivor the not eating and the' constaption is just something that happens to some kids'.

She has had blood work done at 3, 11, 18, 20 months all came back normal except the lower iron also high platelets. She also had the celiac blood test done which came back negative, well duh it would she doesnt eat enough gluten to show up. But the TGA(i think) came back a number .07 which is well with the normal range. She also had some allgery testing done all came back fine except egg came back equivocal which again her pedi said was norm. But her Immunoglobulin G was low 186 (382-1026).

I know it sounds maybe caesin related but she was tested for milk and it back negative. I know she still could have a intlorance. But she was constiaped on the Neocate which is completely milk free.

Anyone have similar exprecices or any advice. I dont know what to do any more none of the docs I see thinks theres anything wrong. But I am sorry there is a reason why a 20 month will starve themselve and dehaydrate themsleves.

Sorry it is really long. I have been lurking on this site now for awhile I finally decied to post hoping maybe someone had a simialr experence. But like I said she will have the endoscope next week and hopefully we will have answers. I also dont know how to spell sorry as well for that.

Janelle

[Mother of Jibril]

Hi Janelle,

Welcome to the group... I think you have found the right place!

My son is a LOT like your daughter. By the time he was six weeks old he was crying all the time (colic), hardly sleeping, projectile vomiting, and having green diarrhea with streaks of blood. I read about casein intolerance on the Internet and all the symptoms fit, so I thought... why not give it a try? I took all dairy products out of my diet (since I was breastfeeding) and within a few weeks he was completely back to normal.

We waited until he was six months old to start solids. He hated EVERYTHING, especially the fruit. The only foods he could tolerate were rice cereal and "summer vegetables." He was also getting a rash around his anus and terrible eczema on his face and legs. That's when I figured out that he's intolerant to corn! As long as he doesn't have corn or dairy (I refuse to try gluten) he sleeps great, looks great, and is a happy little boy.

Almost all the commercial baby foods (even the organic ones) have gluten or corn in them So... I bought a food mill and started making purees from scratch. It works great! My son is now eating all types of meat, vegetables (he'll even eat brussel sprouts!), coconut milk, almond milk, eggs, and avocados. Yesterday he ate a little mango, but he spits out bananas.

I think you're really smart to realize that something is not right. Kids can go for a few days without eating much (especially if they're sick), but it's not healthy if it goes on for more than a week or two. You know your daughter better than any doctor!!

[sugarsue]

Hi! Sounds like you are in the right place and it sounds like you are a great mom and noticing that something is not right with your child! Mom's know!

My daughter used to spit up her entire bottle when she was a baby. I got so I was scared to feed her because the entire thing would come up every time. The doctor's said it was fine but I knew something was wrong. Then, she could not get the hang of eating. It took us forever to get her to eat baby food. There are other things too but these are the two that your poste reminded me of. She turns out to be very gluten intolerant and didn't know until she was 6 and having many other issues. Anyway, I don't have any answers for you but wanted to say to trust your intutition. As your daughters mom, you know that something is not right and you are her voice. Keep on looking until you find out how to help her. I know you can do it.

[Genna'smom]

Hi

I too have a daughter who was sick all the time, a cranky baby and they diagnosed with GERD and is still on prevacid and 2 1/2 for that. She ws eating and drinking fine till April 08 when she had a severe ear infections (1 of 6 since the fall before) and she totally stopped eating and drinking and was hospitalized for failure to thrive - she was down to 18 lbs at 23 months old. She ended up having all sorts of test - but we really had to push and the only thing they came up with was early warnign stages of celiac disease from the biopsy. Her blood tests were all negative and she went through 51 shots for allergy testing and all were negative inlcuding wheat. I am still not totally convinced she has it but we went gluten free and they had to put in a feeding tube (first in her nose and then in her stomach) as she still would not eat or drink. She is doing better and is fianlly starting to eat better but now other issues are coming out in her behavior and some other issues and she was a twin and her twin passed away after 19 days. BUT my best advice to you is you are the mom and keep pushing until you find some answers. We are still doing some testing ( a swallow study) as she still gags on foods and tells us things are yucky and we think her tast is off.

Good luck and keep us posted.

[MarsupialMama]

Just a side note - both my daughters had chronic constipation since newborn - they would have a BM once a week. Now my newborn son goes about once every 3 days. After we went gluten free it has improved - Dughter #1 goes several times a day, Daughter #2 at lest once a day, and newborn going once every 3 days instead of every week like the last two (although I want improvement on this). Diarrhea is usually the celiac issue, but the opposite does happen. It did with us. Our pediatrician said that he has never heard of a case of constipation with celiacs (like, where has HE been?!?). Don't believe it.

[Snow Angel]

Janelle...I have to add my 2cents.. not necessarily celiac related

her Immunoglobulin G was low 186 (382-1026).

Might want to follow up with this, preferrably with an immunologist who knows about hypogammaglobulina..You can get good doc referrals from Open Original Shared Link if you call/email them., (they have a forum too) ...I am not familiar with pediatric ranges, they are lower than adults because once they stop getting yours from the placenta they have to start producing on their own and can have transient phases of low values, so this could come up and be nothing to worry about. Some subclasses like IgG2 may not be fully developed until after 8-10yrs.

She also gets sick all the time. She has had a cold/ear infection/cough/croup/runny nose thing going one since like the beginning of Oct. She seems to be getting over something then she comes down with something else. She is very pale, bags under her eyes and exshusted all the time now. She was dianosed boardline iron defeincy aneamia.

But..your DD is 50% below range, IgG2 (the most common deficiency in kids) makes up only about 20%, and she has too many symptoms to ignore..that are VERY common for immunodeficiency. You should have her total IgA count if they did celiac tests. See if that is low/ below range too, that addition would also be a indicator of a problem here. Because of her age testing will be harder, but they should check IgA, IgD, IgE, IgM and subclasses IgG1, IgG2, IgG3, IgG4.

How high are her platelets- have they just been trending up and now over range or was it a one time #? a little elevation can be chronic inflammation/anemia...alot high is NOT good. Point that out to doc when you call. How's the WBC? any low? high?

Other good info @ Jeffrey Modell Foundation / national primary immune defficiency.

the domain name looks weird but its the right place ->Open Original Shared Link

I'm sure i worried you ..i'm very sorry, I don't have perfect information & I don't understand these problems for young children - please keep that in mind.

[mommida]

One statistic I have read says constipation occurs for 30% of Celiacs - the big "D" is not the only symptom.

I am concerned about your communication with your Ped. gastro. If the ped. gastro. gives you the feeling, "nothing is wrong" how are you going to trust negative results from the endoscopy WITH BIOPSY?

I suggest you make sure there will be biopsies taken EVEN IF THE TISSUE LOOKS NORMAL!

You know your child has symptoms of something. The symptoms should be discussed and the ped. gastro. should tell you what the symptom are related to. What are the endoscopy with biopsy results going to diagnose or rule out.

My daughter was diagnosed as probable Celiac at 17 months and Eosinophilic Esophagitis Dec. 17th at the age of 6.

EE is considered a difficult diagnoses, because in some cases the tissue looks normal and was not biopsied. It is often diagnosed as GERD.

If my daughter was suffering for years with EE, it was overlooked by ignoring symptoms because of Celiac. It is possible to have two "unrelated" conditions in the same individual, but a closed mind will have a much harder time seeing it.

[TJ060306]

Janelle...I have to add my 2cents.. not necessarily celiac related

Might want to follow up with this, preferrably with an immunologist who knows about hypogammaglobulina..You can get good doc referrals from Open Original Shared Link if you call/email them., (they have a forum too) ...I am not familiar with pediatric ranges, they are lower than adults because once they stop getting yours from the placenta they have to start producing on their own and can have transient phases of low values, so this could come up and be nothing to worry about. Some subclasses like IgG2 may not be fully developed until after 8-10yrs.

But..your DD is 50% below range, IgG2 (the most common deficiency in kids) makes up only about 20%, and she has too many symptoms to ignore..that are VERY common for immunodeficiency. You should have her total IgA count if they did celiac tests. See if that is low/ below range too, that addition would also be a indicator of a problem here. Because of her age testing will be harder, but they should check IgA, IgD, IgE, IgM and subclasses IgG1, IgG2, IgG3, IgG4.

The only number on her celiac test is Tissue Transglutaminase Antibody and that was .7 (0.0-10.0)

How high are her platelets- have they just been trending up and now over range or was it a one time #? a little elevation can be chronic inflammation/anemia...alot high is NOT good. Point that out to doc when you call. How's the WBC? any low? high?

3 months 608 (140-440)

11 months 414 (140-440)

20 months 514 (130-400) Different lab than the other 2

Her WBC came back fine the only thing that was 'different' is that her red blood cells where small and flat which the pedi attrucbed to the iron defenciy ( I dont know if that could me anything else)

The only reason I am nervouse is becuase auto immune dieases run in my mothers side. My cousin has a rare auto immmune diease Mixed Connection Tissue Diease, my other cousin has one they just dont know which one yet. I have an aunt an uncle wiht RA. I am just scared there is some underlining auto immune disorder and noone thinks that. Is there a test to see if she has an immune problem?

Other good info @ Jeffrey Modell Foundation / national primary immune defficiency.

the domain name looks weird but its the right place ->Open Original Shared Link

I'm sure i worried you ..i'm very sorry, I don't have perfect information & I don't understand these problems for young children - please keep that in mind.

Thank you for your input

[Mother of Jibril]

Unfortunately, there's no single test to diagnose autoimmune disorders... or even a single type of doctor to go to! For example, rheumatologists deal with RA and SLE. I saw an ENT yesterday who was willing to run tests for Sjogren's Syndrome, but he said he doesn't treat it... if I'm positive, I'll need a referral to another doctor (a rheumatologist). Your daughter could also benefit from seeing a hematologist and/or a GI. The trick is that some specialists require referrals... so you also need a good pediatrician who's willing to work with you.

Autoimmune disorders and their related symptoms run in my family too. If you can figure out what's happening with your daughter now, you might be able to save her a lot of problems down the road!

Also... anything above zero on Ttg indicates a reaction to gluten, even if it's not severe enough to be considered celiac disease. Don't be afraid to try the gluten-free diet! It's really, really not necessary for human nutrition.

[Aleshia]

Just a side note - both my daughters had chronic constipation since newborn - they would have a BM once a week.

were you breastfeeding your daughters? it is totally normal for a fully breastfed baby to only have a BM once a week... unless of course it was like hard pebbles.... on the other hand if they were bottle fed they should be having a BM every day