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Member Since 28 Apr 2012
Offline Last Active Aug 12 2012 07:15 PM

Topics I've Started

Anyone's Child Have Pancreatits?

24 July 2012 - 08:00 PM

Since my son's fecal tests for malabsorption came back negative, they are running a fecal elastase test on him...I dropped off the sample today. They are trying to determine if he has pancreatic insufficiency. I have read that the number 1 cause for this in children is CF, which we've already ruled out via sweat test, and another genetic syndrome which I'm 99% sure he doesn't have, and the 3rd most common cause is "ideopathic pancreatitis". I've also read that there are some strong links between Celiac and pancreatitis and so I'm wondering if this is something that anyone else has had experience dealing with, and if it will explain why we've had improvement going gluten free but not stopped the chronic diarrhea overall.

An Update On Us...

10 July 2012 - 06:50 PM

We have now been gluten free for 6 weeks, and I have been gluten free for 2 weeks, and we're still not really seeing a huge improvement in his stools. And today, his poop was a little bit gritty/sandy again, so I'm not sure if he got glutened or reacted to something else.

I've been researching gut healing diets and SIBO because I wonder if that's hindering healing. I've been thinking about it, and wonder how much of a role antibiotics have played in all his gut problems. I had routine antibiotics in the hospital because I was GBS positive. Then I had a ton of antibiotics when I had pneumonia, which I know affected him based on his stools. And finally, he had a round of antibiotics for an ear infection the week before he caught the tummy bug that kicked off his chronic diarrhea and full blown symptoms. I think we have a lot of work to do to really get his gut bacteria back into a healthy working order before his stools finally resolve and his belly bloat goes away entirely.

And finally, I got my test results back from Prometheus today. All my antibody tests were negative, which I can't say I'm not relieved about (though I know they're not foolproof), but I did learn a surprising fact - I am positive for DQ8, not DQ2.5. Which of course means that DH must be, so he is going to get antibody testing himself, and I encouraged his parents to get screened. And it definitely cements my enthusiasm for getting this new baby screened sooner than later, since they run the risk of being a DQ2/DQ8 heterozygote, which is one of the worst combinations, though hopefully they'll luck out and avoid one or both genes.

So I'm still processing all this, and doing lots of research. I did find out that I have to get a referral to see the other hospital's pediatric GI, but I managed to get my son's well visit moved up to next week, rather than a month from now, so hopefully they will switch us without too much hassle. I just want to get my son healing, and the sooner the better, especially with this baby coming in the next few weeks.

I Hate My Pediatric Gi...

03 July 2012 - 06:39 PM

Our appointment today could barely have gone worse. So, at the GI's office, we had a different nurse this time, who I had to correct that we had done naked weights on my son the past 2 visits, rather than clothed on the digital scale. Then when she measured him, he had somehow shrunk. Fine, whatever, different nurses, it's just frustrating because I know he's grown since his 18 month clothes have gotten too short for him.

Then into see a different nurse, whom I gave a monthly update to. An update that I'm pretty sure the GI didn't even look at.

Then he came in, asked me how we were, and if DS was any better, and I explained that we'd had some improvement in stools, but not completely. Then I explained that I'd only recently gone gluten free myself and that DS had probably been getting gluten via my colostrum before that. Then he asked about the dietician, I told him she was happy with our diet, he complained fairly that I hadn't returned the food log they gave me to take home - my bad, I've been busy and pregnant and haven't mailed it back, and then he told me that we should come back in 2 months.

So I asked him about what our next steps were. And it was like he woke up and actually looked at my son's charts enough to criticize that DS had coconut milk when he should have pediasure, and again stated that he wasn't getting enough calories. So I said no, and he was definitely getting enough calories, that some days he got as much as 1500 calories because I had been tracking it before the dietician appointment. And the GI laughed and told me that there was no way he was eating 1500 calories, and when I disagreed, he asked me where it was all going then? Because it would have to be either getting vomited up or pooped out or a problem with his metabolism, and his thyroid levels were fine.

I agreed that he wasn't vomiting it up either, and repeated that I was sure it was getting pooped out. So then he decided that we need to do a malabsorption study on my son NOW...it's been three months, and they've just decided to look at this now?

I am convinced that the GI thinks I'm lying about everything and is only doing this study to prove that my son isn't malabsorbing and I'm just not feeding him enough calories, and that there is nothing else wrong with him. I'm also worried, given that his diapers are making progress, that he won't show "enough" malabsorption by the time we get this test performed. Of course we couldn't have done this study before we went gluten free. Ugh.

And then just to put a cherry on top, he not only circled failure to thrive but weight loss on this visit's diagnostic sheet. Which is bullshit, because my son gained, albeit only a minor amount, going from 22 lbs exactly to 22.5 lbs in a month. Unfortunately, between that visit, we also had a weight from the dietician visit, where they stood him, fully clothed, on a different digital scale. Of course, he weighed a little over 23 lbs at that visit, because he was wearing clothes! But the GI used that weight to diagnose "weight loss", apparently - he didn't even say anything to me, so I didn't notice it until we were checking out.

I am going to start looking for a 2nd opinion tomorrow. Not sure how to phrase it in a way that won't get us rejected. It just seems to me that this doctor has decided that I'm the cause of my son's health issues and isn't willing to look for the real cause - I mean, I'd think the next step would be allergy testing or something like that. I feel so angry and defeated right now.

Vent/feeling Frustrated In General

23 June 2012 - 10:36 AM

I feel like a bad parent today - we've been technically gluten free for almost 4 weeks, but since I am still occasionally eating gluten until I can get bloodwork (which will hopefully happen on Monday) and he is still comfort nursing 1-2x per day and getting colostrum, I'm sure that he gets a little "glutened" every time he nurses. His sleep has very off this week, so I'm at a loss as to whether it was just the act of nursing, teething, or cross contamination from something else, and while I realistically know that he's getting a tiny amount of gluten through me, I'm sabotaging our efforts at gluten free, I'm also frustrated that his diapers aren't improving.

And sure, it's easy to say "just wean him", but the reality is very different, and being 8 months pregnant, my abilities to get him down for a nap or calm him in a meltdown are greatly limited. I really just want to be fully gluten free with him, but then I also have no idea how long it will take the levels of gluten in my colostrum to go away. Wish I had some idea of the PPM of gluten in a teaspoon of colostrum.

And then I'm frustrated by friends who "don't get it". I don't blame people for not knowing that if he has food prepared on a surface that may be contaminated, like a scratched non-stick skillet or cutting board, it may not be safe to eat. But he's a toddler. They will snatch and eat anything that looks tasty to them, so I cannot for the life of me understand why my friends whom I have talked to extensively about how he will have to be wheat free for his entire life don't seem to think that maybe it's not a good idea to bring cheerios with their own toddlers when they come over for a play date. I'm fine with supplying gluten free snacks, it's just a little infuriating to find cheerios on the floor after a play date. I know I just need to say something, but I don't see why this has to continue to be an issue - if their kid had a peanut allergy, I would be sure not to bring peanut containing snacks around them - I've always asked about peanuts or other potentially allergen containing foods when I'm not sure if parents would be upset bringing them out, so when it's a known issue, I just don't get where other people's brains are on this.

Well, We Got Our Prometheus Results...

20 June 2012 - 10:16 AM

Of course, all the serum tests were negative. I really wasn't psyching myself up for anything else, but it's still frustrating, since I feel certain this GI won't give us a diagnosis without positive results, given his "inconclusive" biopsy results.

However, we did get the genetic results as well, and they at least make me feel like we're on the right track. He is a heterozygote, according to his results, but he is DQ 2.5, which is the most common DQ2 combination for Celiac. Prometheus rates his likelihood of developing Celiac at 10x the normal population and lists him as Category 4 - High.

I feel that, given our suggestive biopsy results, with those genes, if he responds positively to a gluten free diet, it deserves a diagnosis, but we'll see what happens. I will definitely be seeking a 2nd opinion if his current GI is unwilling to diagnose.

We are 3 weeks gluten free as of yesterday, and in the last couple days, I do feel like maybe we are seeing an improvement in his diapers. Not that they're normal, but they've finally lost the sandy, gritty stickiness, and are vaguely formed. He is also showing signs that make me suspicious that a growth spurt is coming on. I feel like we are on the right track and I am hopeful that, when we meet with his GI in another 2 weeks, we will have some weight gain and height gain to show for our efforts. Obviously, that'll be good enough to convince me, regardless of what his GI says.

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