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greenbeanie

Member Since 10 May 2013
Offline Last Active Nov 15 2014 09:13 AM
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Posts I've Made

In Topic: 3 Yr Old - Endoscopy

13 November 2014 - 02:24 AM

My daughter (age 4 at the time) was positive on all three blood tests they ran (tTG-IgA and both DGP tests), and she had a positive biopsy but the damage wasn't visible during the endoscopy itself. And it was only the biopsies of her duodenal bulb that showed damaged villi. Her doctor was very surprised that the biopsies didn't show more damage throughout, given her high blood tests and tons of symptoms. But it was enough to confirm the diagnosis. When they told me everything looked normal on the day of the endoscopy, I worried that we'd be left with no clear diagnosis - but we did get one once the biopsies came back.

Hang in there! The waiting is so hard, but it will be over soon.

In Topic: Toddler Test Results. Help!

05 November 2014 - 03:30 PM

Welcome to the forum, kcrawford! I just want to echo what others here are saying - though it's really hard to keep feeding a kid a food that seems to make him sick, he needs to keep eating gluten if there is any chance of doing an endoscopy. It may be much, much harder to put him back on it for testing in the future, so it's definitely better to get everything done before changing his diet permanently.

Did you have the DGP-IgA and DGP-IgG tests run as well as the tTG tests? They are sometimes more accurate in very young children.

We were fortunate that my daughter got a clear celiac diagnosis at age 4, after problems essentially since birth, and having a clear diagnosis made our lives immensely easier. Not only did we finally have a solution to the problems we'd been guessing at for years (which was a huge psychological benefit after so much uncertainty), but having the official diagnosis helped her school and other family members take it seriously. Even with a clear celiac diagnosis, it's hard to get people to realize that even a tiny amount of cross-contamination can be a problem - and having medical documentation to back up the need for that degree of vigilance is really helpful.

It sounds like your little guy might benefit from a gluten-free diet regardless of whether he has celiac or non-celiac gluten intolerance, and I'd definitely encourage you to give the gluten-free diet a good long try once all testing is complete, regardless of test results. But before doing that, seeing a GI doctor (while he is still on gluten) is definitely preferable. Other types of doctors often don't know enough about celiac to even order the right blood tests, even when they are very competant in other areas. We had to go to three different pediatricians before one would even agree to order the celiac panel for my daughter - the first two had the common misconception that all children with celiac are short, whereas my daughter has always been tall for her age - and even once we found a sympathetic doctor and my daughter's blood tests all came back with high positives, he still gave us bad advice. He told us to take her off gluten immediately, even before seeing a GI doctor or doing an endoscopy. Fortunately, I knew from the helpful advice of people on this forum that I should keep her on gluten until the endoscopy was done. That turned out to be crucial for getting confirmation from the endoscopy that gluten really was the problem.

Good luck!

In Topic: Low Cholesterol

21 October 2014 - 03:34 AM

I've had low cholesterol in the past too, and it has come up into the normal range since I've been gluten free. I don't have a clear diagnosis either, but had decades of symptoms that improved hugely once I completely eliminated all gluten very strictly. Being gluten- light for years didn't really help that much - it was the last little bit that made all the difference.

I'm in the U.S. and my cholesterol was reported with different numbers, but I think my total cholesterol was around 130-something when the lower end of the lab's normal range was 160, and my "good" cholesterol was low too. I eat meat and eggs a couple times per week, and I was eating a lot of cheese and yogurt then too, so there's really no reason it should have been low. High cholesterol actually runs in my family. My doctors said that low cholesterol was great, and they even congratulated me on it! Anyhow, it wasn't super low like some people's, but given that I was having tons of other digestive problems at the time, I was annoyed that they brushed it aside so quickly. At my most recent test, my total cholesterol was 165, just into the normal range. My "good" cholesterol (I always forget which one that is...) was still very slightly low. My ANA also went from positive (not a high titer) to negative in that time.

Good luck!

In Topic: Ttg Still Positive And Stopped Falling, But Negative Dgp?

17 October 2014 - 03:13 PM

Thanks, Nicole. I will try to get the EMA run next time too, as that might help clarify what's going on. She did not have the EMA run at diagnosis - her doctor said it's rarely positive in young children, and her biopsy and other blood tests were all strong positives, so there wasn't any doubt about her diagnosis. So we wouldn't have a previous result to compare it to, but it might still be a useful piece of the puzzle now. 

 

We're going to wait a while before getting the thyroid tests run, since she'd had lots of blood draws and shots lately, but hopefully her tTG will start dropping again or we'll have some other answers in a few months. I am very relieved that the DGPs are negative now, so at least we're not driving ourselves crazy with thinking that she's getting hidden gluten somehow. 


In Topic: Ttg Still Positive And Stopped Falling, But Negative Dgp?

17 October 2014 - 01:02 PM

The fussiness could certainly just be her age, and it is a million times better than it was before, but what I am concerned about is the fact that her tTG is still positive and stopped falling, despite evidence (the lowest possible negative DGP tests) that she's not getting exposed to gluten. Do some kids just have positive tTGs forever, despite evidence that they are following a strict gluten free diet? I guess I'd be less concerned if she were an adult, but she's five and a half years old and it seems like she should still be healing (tTG should still be falling).