Suspected Celiac In Toddler

[maddierozell]

I have a 19 month old son that I am suspecting may have Celiac. He is very small. He is 19lbs and only 27" tall. He has been sick since the day he was born. He is constantly constipated and vomits almost daily. He also has chronic respiratory infections. As of about 4 months ago, I started seeing these small liquid filled sacs in his stools. They are comparatively about the size of a grain of rice. The will pop if you squeeze them and a clearish yellow liquid will come out. I have had him tested for parasites and it came back negative. My son has always had issues with constipation and gas. His stomach stays big and swollen. We have an appointment at Texas Children's with a GI next month, I am just trying to narrow down things I can bring up to the doctor. When looking at the symptoms of Celiac's everything seemed to click. Right down to his asthma and size issues. When I asked his pediatrician about the sacs in his stool he was at a loss and could not even begin to make a guess. I myself also have had a diagnosis of IBS with bad episodes of constipation and diarrhea. Celiac is the first thing in my mind and I am kind of just wondering if these things sound like this may be the answer to our problems? Any help would be extremely helpful and appreciated.

[nvsmom]

It could be celiac disease, the symptoms would fit.  Unfortunately, very young children can be harder to diagnose than adults so make sure he has as many test run as possible.

 

The blood tests to ask for are:

tTG IgA and tTG IgG (anti-tissue transglutaminase) - most common tests

DGP IgA and DGP IgG (anti- deaminated gliadin peptides) - new tests, and the best for detecting early celiac disease or celiac disease in children

EMA IgA (endomysial antibodies) - tends to be positive in more advanced cases, similar to the tTG IgA

AGA IgA and AGA IgG (ant-gliadin antibodies) - older and less reliable tests, some believe it can show non-celiac gluten sensitivity (NCGS) as well as celiac disease

total serum IgA (immunoglobulin A) - a control test; 5% of celiacs are deficient in IgA which results in all IgA based tests (tTG IgA, DGP IgA, EMA IgA) showing a false negative

Endoscopic Biopsy

 

He must be eating gluten (the equivalent of 1-2 slices of bread per day in an adult)) for the 8-12 weeks prior to blood testing, so do not go gluten-free yet. The ednoscopic biopsy only needs 2-4 weeks of gluten for an accurate test.

 

I like this report for information on the tests: Open Original Shared Link

 

There is also genetic testing. Celiacs tend to have a positive DQ2 and/or DQ8 genes BUT so does 30% of the population.  A positive genetic test is not a positive celiac test; it just means you are in the higher risk group.

 

There are about 300 symptoms and associated disorders that come with celiac disease. Your son has a few of those, and so do you, Mom, so he should be tested.  Don't let the doctor "pooh pooh" your concerns.... You should be tested as well - there are many many people around here who were first told they had IBS only to find out those symptoms were actually caused by celiac disease. Really, IBS is just a description of symptoms and not a diagnosis at all. 

 

Good luck with it all, and welcome to the board! 

[maddierozell]

Thanks so much for the help! We have been fighting the battle of what's going on for over a year now. He has so many more symptoms that match up as well. Hopefully the doctor will be as equally concerned!

[brit16]

Don't have answers for you - just wanted to tell you that we are going through the same exact thing right now. He is 19 months - constant diarrhea and although he weighs a "normal" amount (24 pds) he has not gained any weight at all in about 6 months. We are also trying to get answers through Texas children's. Who is your dr - we are seeing a GI specialist named Kitagawa. Good luck you - hope you get answers for your little one soon.

[Danalin26]

My dd (20months) was just diagnosed with celiacs 4 weeks ago. She had a positive endo but negative blood work other than testing positive for the celiac gene . Our dr told us it was very hard to diagnose any kiddos under 2. She has been having symptoms since December (no weight gain, bloated belly all the time, random vomiting, constipation, irritability, circles under her eyes). She's been gluten free since she was diagnosed and is doing so much better. It took a good 2.5 weeks for her to start feeling and looking better. I hope you find some answers soon. I felt it took way too long for my daughter. We are military and had to go through all the proper channels first unfortunately.

[maddierozell]

Thank you so much for the replies! Brit16 we are seeing Dr. Davis right now because we initially thought this was a food allergy (dairy,soy,etc). She is a great doctor though and specializes in Gastro in children, so hopefully we won't have to switch. Danalin26 I am so glad that you have a diagnosis!  We have been searching for them for over a year. This seems to be what clicks especially since I also have stomach issues. I have been eating gluten free for about a week just to test myself in a way (to see if I'm just a crazy mom, cause everyone thinks I am). I have already noticed a decrease in stomach pain. Had 4 really bad stomach aches in the same week and decided to try it out. Hoping the doctor's appointment goes well, and that his doctor is willing to at least acknowledge this concern.

[africanqueen99]

Will they run a stool sample?  It won't confirm Celiac, but the sacs sound like something is going on.

[maddierozell]

Will they run a stool sample?  It won't confirm Celiac, but the sacs sound like something is going on.

I had a stool test done when I first started seeing them in his stool and all they said we that they weren't parasites! It really is insane how hard it is to get answers. My son is so sick and every doctor has a different opinion. His pediatrician literally told me that its okay because he is suppose to be sick more often than well at this age. I feel so bad for him. He has thrown up in his bed every single night this week. We are both ready for answers

[maddierozell]

Update: Went to the doctor on the 16th. They ran a celiacs blood test and also a stool test for proteins, sugars, fats, etc. Blood results came back as a negative (as I suspected they would). The stool has yet to come back. They are sending us to a GI August 15th. Also his platelets were slightly elevated but no anemia or issues with white or red blood cells. His IGA was less than 1 and his total IGA used as a control was 28. He will be scoped in the near future, but would love some advice or to know if anyone else has had similar issues with bloodwork.