Daugher Getting Tested For Celiac

[Jemms1028]

I'm new to this forum and had a few questions. I'll go back to the beginning. When my daughter was born she was always a very spitty baby, she FINALLY got Zantac for reflux when she was 10 months old. She was doing great with it and started to wean her off of it. She finally got off of it when she was 13 months old and did wonderful without it. Without warning 2 months later she started to spit up again. I mentioned it to her pedi and she felt that at this time, she shouldn't be spitting up anymore, and referred her to a GI. When I was telling her GI about all of the symptoms including her constipation issues when she was an infant and now diarrhea on and off he highly suspected it was Celiac Disease, but in the mean time he put her on Prevacid. They did blood work and only 1 of her test came back abnormal (tTG). It wasn't extremely high but still in the abnormal range, so he left it up to me as to whether or not to do the endoscope. I chose the wait it out option and do a repeat blood draw in 5 months. Last weekend she started to have her diarrhea spells on and off again and on Sunday her stomach did seem to be a bit larger than normal, so I called him last Wednesay and he wants to do a stool sample. The stool sample has come back negative, so now I just don't know what to expect. Does that mean she definately doesn't have Celiac? Should I still expect them to want to do an endoscope? I am new to this and need some thoughts as to what to expect if/when she has to do the endoscope and what your symptoms and diagnoses journey was. Any help you can provide would be wonderful. Thanks so much

[MitziG]

The ttg is pretty reliable- even a weak positive is a good indicator of celiac. What your ped should do is run a full celiac panel. Aside from the ttg this should include Deamidated Gluten Peptides and Endomysial Antibodies. Another positive would be indisputable for celiac.

But....it doesn't end there. Unfortuantely the majority of the medical commmunity is pretty ignorant of the prevalence of celiac and how to properly test for it. If she has positive bloods they will likely insist on endoscopy- which especially in small children is pretty unreliable.

So...here is where you are. Your daughter almost definitely has celiac. This requires a gluten free diet for the rest of her life. She will never outgrow it, and don't let a doctor tell you otherwise.

It is a big commitment to make on a PROBABLY. You need the diagnosis.

Get a full panel of bloodwork. Do the endoscopy and insist on a minimum of 6 biopsies from the duodenal bulb. Yes you DO have to be specific. You would think a GI would know how to test for celiac...but a lot of them do not.

Stool testing is not an accepted method of testing- I am surprised your doc even did it.

Then, once all tests are done, begin a gluten-free diet. Don't wait for diagnosis- you may not get it. The real answer would be in her response to the diet.

Lso, get yourself and other family tested. Celiac is genetic and she got it from someone, although you may not have "active" celiac disease.

Spend some time here- you will soon know more than your doctors.

[frieze]

The stool test would not be for celiac. It is fairly unusual to get a + test in a child so young, so I would bet she is Celiac. get the endoscopy done, then take her gluten free. And since it is genetic, you and her father should be tested as well.

LOL i see mitz beat me to it. The stool tests are likely for parasites, you know how toddlers put EVERYTHING in their mouths!

[Persei V.]

Oh well, I am the helpless newbie of the forums, but from what I've gathered, celiac tests are not always accurate. Which doesn't mean you should go gluten-free without a diagnosis. Maybe you should take her to an endoscopy and work with another possibilities meanwhile.

I am not sure of how to proceed if the symptoms don't go away and your daughter remains with no diagnosis. People always advise you have to be diagnosed, but I think if the case goes down to it, removing gluten from her diet for some time to see how it goes would be the best approach.

I might be wrong, though.

[Jemms1028]

I would like to thank you for all your help. You have no idea what I've been going through lately (well I'm sure you do) but it has been getting increasingly worse with her screaming bloody murder, and I feel so helpless because I know she is in pain. She has an apt tomorrow with the GI and I will insist that she gets the endoscope now that I know the stool doesn't really diagnose, with the 6 biopsies. I mean I did know the only true diagnoses is through the endoscope, but I was hoping to avoid having to put her under anesthesia, but if that is the only way that things can be better then it will be done.

[mommida]

I would opt for the endoscopy from my daughter's experience and diagnoses.

Not only was probable Celiac diagnosed but also Eosinophilic Esophagitus. Previcid does help a little in EoE treatment. EoE also has a seasonal "flare" in patients. There is also a known connection between Celiac and EoE.

A full proper diagnoses now can spare your child so much suffering. It is a really hard decision but so so many disorders present with These symptoms.

[nvsmom]

Doctors are starting to diagnose celiac based on the blood tests alone; I was. My positive tests were the ttg IgA and EMA. I never had the endoscopy.

Many children, especially under age two, test false negative for celiac because (so the theory goes) they haven't had the time to develop enough of the antibodies to show up on a test. If that's the case, I would say that it's extremely significant that your daughter even has a positive test. I think I would assume celiac if in your shoes.

Abnormal is abnormal. It's virtually impossible to get a false positive test on a ttg; just like it's unheard of to have a false positive pregnancy test... If do an endoscopy and it ends up being inconclusive (sometimes they don't biopsy damaged areas) I would consider going gluten-free anyways. Its really not that tough of a diet once you get used to it.

Best wishes to you and your daughter. I hope she feels well soon. And kudos to you for looking into this so well and not dismissing your daughter's symptoms; I wish my celiac had been caught back then too.