I Would Like Some Advice.

[TBLKWL]

I have some questions. My daughter is 16 months old and she has been having D for the last 5-6 mo and we ran a Celiac panel and her tTg came back 3 pts high. We saw the GI last week and he was very nice and listened to me and loved all over both of my kids and in the end he days toddlers diarrhea. I was so stessed by the time he said that was her dx that I didnt even say anything. He did run stool samples to check for infection and all of that came back ok. But I thought the tTg was kinda a sure thing, am I wrong?? I am a nurse and the Dr that I work for (a GP) is really lost in the Celiac thing so he really cannot help me. Also in the last week she has started having more solid stools but they till look like she is having malabsorbtion. The GI wants me to push gluten and retest next month. I am pushing gluten , anything she wants, crackers, toast, cherrios, and she is hungry all of the time again and very fussy and tired. I think I just dont know what to do now, but if anyone understands any of this please help me. Thanks.

[Nantzie]

Celiac is so difficult to diagnose that a lot of us here (more than half according to the latest poll here) end up with a diagnosis of "gluten intolerance" rather than celiac because of negative, borderline or inconclusive test results. The truth is that testing just isn't reliable. Period. If your daughter is doing better off gluten, then that's the most reliable test there is.

Doctor's who really specialize in celiac will tell you that a slightly positive test for celiac is like having a slightly positive test for pregnancy. If it's positive then it's positive.

As nice as the GI is, it sounds like he's just not very well informed about the current understanding of celiac and gluten intolerance. Since he sounds like such a great person, you may want to give him some information when you're feeling comfortable about it too. You may be saving a lot of kids and parents a lot of struggles by educating that one doctor.

When I saw my doctor I already had found this site and had been reading/learning here for over a month. Then another couple months to see a GI and get the biopsy. When all my test results came back negative, I told her that I was going to try the gluten-free diet and just see if it helped. I had already done enough gluten-free challenges over those months that I was 100% sure my 18 years of health problems were gluten-related. When I reported back to her my results on going gluten-free, she was really happy for me. The last time I saw her, she said that she had a few other patients just like me who had a lot of the symptoms of celiac, but negative test results. She's just starting to ask patients who go through testing to give the diet a shot even if their tests are negative.

So sometimes just going on the diet and reporting back what happened is enough for a doctor to open his eyes a little bit to the possibility in other patients that there are more forms of gluten intolerance than just celiac.

Based on her test results and symptoms on and off the gluten-free diet, including improvement in bowel movements, there are some people here who have gotten an iron-clad celiac diagnosis. Although a lot of doctors will make you do a gluten challenge and then consider a diagnosis.

I would definitely put her back on the gluten-free diet. Doing the gluten challenge is up to you. Some people do it and some people don't, so either way you've got a lot of company here.

Nancy

[RiceGuy]

I second the gluten-free diet. It cannot hurt your child, and it may help more than anything you could ever try otherwise. It may take a little while to see things clear up enough to be sure it's working, but at 16 months the chances are good that recovery will be relatively fast. Definitely faster now than if you postpone the diet and allow damage to occur/continue.

[ptkds]

So, do we have the same GI????

When I took my dd (she was around 16 months at the time), she had been having soft poop for months. He told me it was "toddler diarrhea" and said to take her off of fruit for 1-2 weeks and she would be fine. This was after her pedi tested her and the results were positive.

Then I got tested for Celiac, and it came back positive. So I cancelled her scheduled biopsy and put her on the diet, along w/ myself and the other kids. She is doing so much better and I can tell when she has been glutened.

IMO, you should give the diet a try and see if it makes a difference. My pedi has totally approved me putting all my dd's on the diet, and has even written rx's for school for the older girls, even though they don't have confirmed celiac disease.

Good Luck!

ptkds

[shayesmom]

I have some questions. My daughter is 16 months old and she has been having D for the last 5-6 mo and we ran a Celiac panel and her tTg came back 3 pts high. We saw the GI last week and he was very nice and listened to me and loved all over both of my kids and in the end he days toddlers diarrhea. I was so stessed by the time he said that was her dx that I didnt even say anything. He did run stool samples to check for infection and all of that came back ok. But I thought the tTg was kinda a sure thing, am I wrong?? I am a nurse and the Dr that I work for (a GP) is really lost in the Celiac thing so he really cannot help me. Also in the last week she has started having more solid stools but they till look like she is having malabsorbtion. The GI wants me to push gluten and retest next month. I am pushing gluten , anything she wants, crackers, toast, cherrios, and she is hungry all of the time again and very fussy and tired. I think I just dont know what to do now, but if anyone understands any of this please help me. Thanks.

If I had a quarter for every bit of bad advice I was given in regards to my dd....we'd have money to buy gluten-free food for at least a year! lol!!

With a slightly elevated tTg, I'd say the diet is right for your dd. My dd's tests all came back negative for Celiac and yet she did amazingly well once on the diet. Let's face it...as good as our medical system can be...it's still not quite that accurate. And doctors are only human. Celiac isn't something many of them studied a lot on and it is a very confusing disease with symptoms that overlap into a lot of different diagnoses.

And although I am not a medical professional....I still believe that a diagnosis of "toddler's diarrhea" is a bunch of BS! To me, that's basically saying, "I don't know what your child has but I'm going to bank on it improving on its own in the next several months...maybe years. Good luck!".

Sometimes, you have to take matters into your own hands for the sake of your child as well as your own sanity. Find a doctor who will work with you on the dietary trial...i.e....one that can write you a dx of gluten intolerance for school. And as for pushing gluten....I don't think that there's a doctor out there who could convince me to do that....EVER. We've been on a gluten-free diet for over 2 years and I have done a ton of research into Celiac and gluten sensitivity. Many people are better off without gluten in their diet.

Trust in your instincts on this and do what you think is right. You live with your dd 24/7. Your observations are therefore going to be much more valid than those who have only seen her for 40 minutes to an hour.

[Electra]

"Anti-gliadin antibodies are less reliable and have a high false positive rate. Thus a person with an abnormally elevated anti-gliadin antibody level does not necessarily have celiac disease."

I got this info from the following site. I have no idea how reliable the site is and I'm not convinced that this is true, so please don't think I'm trying to give false information. I'm just passing on what I found in-case anyone is interested in doing further research on it.

Open Original Shared Link

[rez]

The previous poster is NOT referring to the tTG test. That is a different test that doctors don't use routinely to screen for Celiac anymore because that test is positive for many other reasons. The tTG test is the BEST out there for Celiac and she is POSITIVE. A good GI would have her scheduled for a scope next week, especially since she's under two, which sometimes even positive Celiacs come back negative on tTG when they're that young. The Chicago Celiac Disease program has a good website you should go to. Again, the tTG is the most sensitive test used for screening for Celiac and she is POSITIVE. I would switch doctors. Look how many people, including kids, have all bloodwork come back negative. If her tTG is positive, there is an autoimmune problem for sure of some sort, 95% statistically it's Celiac.