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TaylorsMom

Could My 2yo Have Celiac?

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Hi, my name is Megan. I need your help to determine if my dd symptoms may be caused by celiac or if they are completely normal and I'm just a neurotic mom.

These are her symptoms:

*As a newborn she had projectile vomiting. I was bf her but switched to formula hoping to stop the vomiting, it didn't work. So I had her tested for Reflux, we saw the GI and were told that it was not reflux. After trying every formula imaginable we finally settled on the Lactose-Free although she was still vomiting regularly. Eventually she grew out of it.

*She turns 2yo today and weighs 23 pounds (she was 6lb 3oz at birth). At her 18 month appt. she was 22 pounds, so in 6 mos. she's only gained a pound.

*She has had off and on diarrhea for as long as I can remember but usually has bulky stools that always have pieces of undigested food in them. They are also very foul smelling. She has between 4-8 dirty diapers a day.

*Her abdomen is large compared to the rest of her. She has very tiny arms, legs, and waist but her stomach sticks out and feels very hard. I have seen pictures in Celiac books of toddlers with distended stomachs and she looks alot like them, although the stomach doesn't seem as big but you can see her ribs easily. I wish I could post a picture to show you her abdomen so someone could help me determine if it looks distended.

*She has always been an extremely fussy baby, crying all of the time, rarely seemed "happy". Now even at 2yo (today is her birthday!) she continues to be very fussy, irritatable, and is constantly clinging to me. Her happiest times are in the morning, but that only lasts for an hour.

*She has never slept through the night, she always wakes up crying at least once, usually more. Just recently, within the last 2 mos, she has started waking up from her naps screaming.

I have read other posts talking about late teething as being a symptom. How late? Taylor didn't get her first tooth until she was 7 mos.

I am taking her to the dr. tomorrow. I had her in 2 weeks ago for abdominal discomfort because she was so irritable and crying contiuously. She would lay on the floor and just roll around and cry. Not temper tantrum like, but more like she was hurting. She was also having diarrhea at the time. The doctor didn't seem concerned because she wasn't vomiting and didn't have a fever. So I called back and told them that I wanted her tested for Celiac and instead I have an appt. I'm wondering if the symptoms that she has are related to Celiac and if I should continue to push for the testing tomorrow. As far as I know there is no genetic link in either my or dh's family.

What were your child's symptoms?

Thanks for you response!

Megan

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Hi Megan,

Wow, your post almost made me cry. I think you definitly came to the right place for support. From everything you said about your daughter, it does sound like Celiac. Even down to the part of the projectile vomiting at birth. I had actually forgotten until your post that my daughter also went through that, and we kept switching her formulas, finally doing okay with Prosobee (soy) for awhile, but then she too grew out of it. The skinny arms, legs, and big/hard belly was my daughter all the way up until her diagnosis. She also went through major bouts of pain in her tummy, she would actually get on all fours and rock/cry/hit the floor. My daughter was also having recurring intussusceptions in her small intestine, that is what was causing her the severe pain. In simple terms, it is like an old fashioned telescope folding in on itself, creating a blockage. This also caused the vomiting to start up again, and that is the short story of how she ended up in the Children's hospital for a month. During her second emergency surgery, they did the endoscopic biopsy and diagnosed her with celiac disease. I also remember from about 9 months till diagnoses her bowel movements were very stinky, and always had undigested food in them. Anyways, I could ramble on and on, but needless to say she is now very healthy, and steadily putting on weight (she was down to 17 lbs in the hospital at 22 months!) Her diagnosis saved her life and I hope that you are seeing a good doctor who will do the right tests to help your daughter out. Best of luck, keep us posted on her appointment!

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Whoa. Sounds like all three of us posting today have been there with our girls. My youngest had projectile vomiting and we went through the formula search until we had her on soy. She did a little better until she too grew out of it. It does sound like Taylor has Celiac. Also, my daughters have nightmares every time they get gluten. I have seen them have nightmares that I have to literally shake them to wake them up. It can be scary. I definitely think you should have her on the Gluten Free diet. There are plenty of us gluten-free moms and we are all happy to help if we can. Feel free to email or post anytime.

Best Wishes, Rian

HAPPY BIRTHDAY TAYLOR :)

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First off, those symptoms definitely sound like celiac disease.

Hmm.....funny........I was never breastfed, but I had problems with my first formula....I had projectile vomiting as well......could I have had it since I was a baby? I didn't have my main symptoms until 7.......I dunno.....it probably wasn't celiac disease with me cause a different, and more expensive formula solved the problem.

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If your daughter doesn't have Celiac, I'd be amazed. Totally. Your daughter is my son...he was diagnosed in June at age 2 1/2 and he weighed 23 lbs...looked like an ethiopian....he had no GI symptoms, just the loss of weight.

Good luck!!!

Bridget

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I was just shaking my head reading your post...sounds just like daughter! She's 2 1/2 years old, but we've had poop issues the past year. She's had intermittent loose stools, horribly foul smelling. She's very clingy and has never slept through the night as well. She seems to have nightmares frequently and always wakes screaming. I'm still not sure if her sleep issues are health related, but I'd like to think so...it gives me some hope that it will improve if her health improves!

She had a colonoscopy last January, which actually showed colitis. She did not have an upper endoscopy at that time. She had a celiac panel (bloodwork) done which showed elevated anti-gliadin IgA's and IgG's though the other two were negative. We're going to retest her again this month to compare...if they've gone up, she likely has celiac. Her colitis is a seperate issue, which we're treating with medication. She might have a wheat intolerance (not celiac), which could actually cause the colitis.

I'd definitely get a celiac panel done. Also, I'd get a CBC done, which is also a blood test. You want to make sure her levels of hemoglobin and albumin are measured. It tells you if she has a "leaky gut" due to inflammation or damage. I'd also ask for a sed rate, which is an inflammatory marker. I'd also start keeping a food journal to see if there's any pattern. Those have been the main tests that my daughter's had which have given the most information. Hope this doesn't confuse you! Good luck at the doc!

Sue

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Hi. Thanks for all of the responses. We went to see the doctor this morning and I still don't have many answers. I told him again of all the symptoms and he ordered a whole list of blood work, stool samples, did a x-ray of her stomach and also wants me to take her in for a sweat test this week to check for Cystic Fibrosis (which I don't think she has). I got the feeling that he thought I was just being overly paranoid. I just told him that I may be overreacting to Taylor's irritability and clinginess, and maybe she is just a petite girl and will always be small. But that still doesn't explain her distended abdomen, and stools of undigested food that are often half watery half bulky, severely foul smelling, and numerous. So I think he's just doing these tests to get me to back down. If nothing shows up on these tests then I think I may be able to get him to do the Celiac testing. It's been a long day already and I still don't feel like I've made any more progress. If anything I've just worried myself more.

Thanks for listening. I'll keep you updated.

Megan

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Megan,

I would definitely *insist* on a referral to a pediatric GI dr. She definitely has something going on and the GI dr can order the appropriate tests.

I practically had to beg my pediatrician to do the bloodwork for celiac and to get the referral to a GI dr. I had to wait a few months to get my dd into a GI dr, so the sooner you take action the better. Most pediatricians just don't realize how common celiac disease is.

Mel

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Megan,

Well, I am sorry to hear that you may be a little more confused after your doctor's visit today. I have to tell you my daughter's GI doc. also tested her for Cystic Fibrosis as well...Thankfully she doesn't have it, but he just wanted to make sure...And you are right that there is still no explanation for the abdominal distention, undigested food in stools, etc. I really think that you should insist on the Celiac tests. What area of the U.S. are you in? I think that my daughter's G.I. doc is wonderful, and I'm also sure I could get him to speak with you about your daughter's condition. Let me know if you would be interested in that. Hope to hear from you soon!!!

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Thank you ladies for giving me such reassurance that I am doing the right thing. It's nice to hear that you have all been in my position and eventually did get a diagnosis, so it gives me some hope. Heather, I am in Northwest Indiana about 30 miles south of Chicago. Through my online research of Celiac Disease I have learned that the University of Chicago Hospitals has a Celiac Disease program. If I don't get anywhere with my ped. I may give them a call. I would love to talk with your GI doc though, if he's anywhere near my area. Let me know.

Thanks again.

Megan

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I agree! If it is possible, DEMAND that a Celiac test be done. I am fueling right now because of your Dr.'s treating you like a paranoid mom. When we got the news that our daughter's test came back positive, I cried for 2 reasons. 1) She had the disease 2) I was happy we had an answer, and we could start feeding her what she needs to be eating, and get her growth back on track. You need to find out ASAP, so your child can start feeling better! Good Luck!


Christi

Daughter diagnosed with Celiac at 14 months old in June 2004.

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You already aren't getting anywhere with your ped! Call the university -- you need a peds GI!! You aren't overreacting, she isn't just petite, she is ringing your "mommy radar" button and lucky her, you can hear it! :) Good job! Don't give up now, you are on the right track. Doctors work for YOU, so get what you want out of the visit. You don't need to feel like they are always in charge-- they know more medicine, but nobody will ever know your daughter better. (And we had a cystic fibrosis test, too, that's not uncommon. And I cried with relief when he was dx!!)

Joanna


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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"Mommy Instinct" is the strongest one there is...don't EVER doubt yourself. Isn't it better to over-react than to regret ignoring something later? A Pediatric GI is definitely the way to go, if only bc they can get the right tests done and then help you through the transition from gluten-full to gluten-free. I LOVE our Ped GI.

And before you even get to it, let me just tell you to have them to the TTG test, which is apparently the most accurate blood test for celiac. The test can only be run at like 5 labs in the country, but it's worth it. And, when they want to do a confirming endoscopy don't freak out. My son is 2 1/2 and he had one, and to be honest it was the easiest part of the whole ordeal! They knocked him out (I wish they'd done that when they drew his blood for the TTG test...hahaha...) and when he woke up (it's an easy wake up generally bc it's such a mild dose of anesthesia...my son had hernia surgery a week after his endoscopy and waking up from THAT was horrible... Anyway, when he woke up he was ready and rarin' to go and even asked for McDonalds. Never slowed him down for a second.

Bridget

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i've been told at support group meetings that every celiac is different - but i have yet to hear of another child being like my 2 yr old, justin, in that he not only has no trouble being under-weight...he has been no lower than the 95th percentile in height and weight, all along! His bloodwork was possitive 6 months ago and we are awaiting endoscopy and possibly biopsy - meanwhile he's gluten free...but like I said, I read these posts and I weep at the babies who are so tiny and week and I wonder...just Justin really have celiac disease???

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Hi!

I just wanted to poke in here and wish you luck with Taylor. My son (Mack, age 2)and I have celiac disease but we are self-diagnosed. I couldn't get our doctors to do the proper tests, so I took action and we went gluten-free 6 months ago. The difference has been amazing. Mack was didn't have any vomiting as a baby, but he started out at 95 percentile and eventually ended up below the 50th. He was very thin with a big hard belly making his ribs pop out. I have a photo of it. Now after 6 mos gluten-free he is doing great! His belly looks normal for a 2 year-old. He used to have chronic diarrhea and would make a BM at least 4x a day. He was also having temper tantrums and had a very short fuse.

He is also casein free, because he seems to have a problem with dairy and also I should mention autism runs in my family so we are doing the Gluten-free Casein-free diet with much success! He is not autistic but I know he has similar food sensitivities.

Since going gluten-free, I met a wonderful naturopath doctor who has been having me take some tests. It turns out I have Leaky Gut Syndrome. I'm pretty sure that ( as well as the other autoimmune issues I have) stemmed from celiac disease.

Anyway, my son is now going up the charts again in height and weight and he not only looks great, he is doing much better in speech and cognitive (he is in early intervention). We also found out he had fluid in his ears and tubes have made a huge difference in his communication skills.

If you cannot get a dx from a doctor, then you can always take matters into your own hands and try going gluten-free (after your tests of course) and see if there is an improvement. In our case there was no question! The one great thing about this disease is that the cure is not a drug, it's just a diet. :-)


Christine

Gluten-free since 2/2004 for gluten intolerance (celiac negative)

Mom to two gluten-free, soy free, low casein boys

IgG test currently showing intolerance to: casein/dairy, egg, sugar cane, yeast, white potato, coffee, amaranth, blueberry, garlic, kidney beans, sesame, whey, banana, pineapple, pinto beans, radish. Have removed these from diet on 10/28/07.

Not showing intolerance to gluten, wheat, barley, rye, soy, rice, oats or corn at this time, but still totally gluten-free for now.

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Hi, were back from Taylor's GI appt. The doctor was excellent and really took the time to listen and talk with me about Taylor's symptoms! He said that he has a "strong suspicion" that she has Celiac. He ordered some more blood work and is scheduling an endoscopy.

Here is a list of what the script for the bloodwork says, can anyone tell me if he's covered all of the necessary tests?.......

CBC, CMP, Serum IgA level and Tissue Transglutaminase (TTG)AG.

Can you all answer another question for me......Taylor always has a distended abdomen but sometimes it is worse than others. For instance in the morning it's the least distended but by evening it can be terrible. Is this normal in Celiac's? Or would it always look the same?

Thanks Again,

Megan

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that test is precisely as it should be - the ttg is what was left off of our test, that is more telling, and since justin has since gone gluten-free, the tests will no longer be active - thats the first thing i looked at when you said to take a look - also, your doctor didnt bother with the ttg, which again, tells me that he/she is knowledgable, as the ttg is often falsely positive and the iga is more "important" - we are also getting the gene and stool panels done. is taylor gluten free?? (hopefully not, yet - so the tests will be accurate) - sorry i cant help on the abdomin thing, justin never had that - good luck - let us know how the bloodwork test go

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Good, I'm glad that he ordered the right tests! Taylor is not at all Gluten Free right now. We did have her off of dairy because that was her regular ped's first thought, that she was allergic to dairy, but we gave that a month with no changes so were giving her dairy again.

Thanks,

Megan

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Kirst4588,

You are a fortunate mom! That your little one has been diagnosed without having to experience a gluten crisis is a miracle. If he had positive blood work and has developed anti-bodies to gliadin, then he is definitely gluten intolerant. He may not have a positive biopsy, that does NOT mean that he can eat gluten. It just means that his autoimmune system isn't attacking itself in the villi of his small intestines. If he continues to consume gluten, and his body has developed anti-bodies to gluten, then it WILL attack itself, somewhere. It could be diabetes, thyroidism, arthritis, autism, the list is long and getting longer.

Celiac's disease is only one of many auto-immune disorders that results from gluten intolerance. Unfortunately, many doctors are missing this.

Don't doubt it, be thankful! :)

Priscilla

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I hope it went well. I can't BELIEVE the doc didn't run a celiac panel while he was doing the other blood work. What incompetance! Bah!!!

After all the testing is done (but only after all the testing is done), you might just want to try taking her gluten-free and seeing how she does.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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whoops... sorry for the double post.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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You know, the difference I see between your daughter and my son is that my son was always big untill about a year ago he just completely stopped growing. He is 3 years 3 months... He is 41 iches according to our ped, 40 today at the specialist (95%)and was 38 pounds at 3 years and just under 35 today at the specialists(75%)... :( The other things all sound the same though...

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Rebecca,

I think Taylor may just be at the beginning of not growing anymore. She has only gained 2 pounds in a years time and only 3 inches taller than what she was at her 1 year appt. So I think, like your son, she may continue to fall on the charts and possibly even lose weight, only time will tell.

Megan

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