Waiting On Celiac Panel Results

[LoveMyDucklings]

(Fair warning: this is going to be long and rambling!)

The wait sucks! Especially because I feel like the worst mother for feeding my child poison, basically, while we wait for results and possible scope. The panel was done June 28, and the ped said it would take at least a week. The 4th of July holiday was in there too though, so maybe that will postpone it some.

Anyway...

My daughter will be 2 next week. She's breastfed plus table food.

In the beginning she had normal breastmilk poops, but they didn't last long. They changed to a thicker more solid poop that actually snaked out of her, long before solids were introduced.

Her poop *stinks* (I realize it's not suppose to be roses, but.....) even when she was EBF, and still now; it smells like stinky mothballs or creosote. :/ My guess is that it's because it stays in there for so long. That brings me to the main cause for concern, her chronic constipation.

Her normal is once a week or so, but she went 4 weeks last summer. Yeah, it was awful! For the approximately 9 months previous, I had been trying to treat at home. At that point, I decided we obviously needed medical help! The ped prescribed an enema cleanse for a couple of days followed by miralax for the next 9-12 months. We did that as much as we could, but it didn't seem to help; partially because she has a low appetite and doesn't drink much (probably because her belly is always so full of poop) and partially because we couldn't ever get the dose right so she would have liquid diarrhea multiple times a day, so then her tummy and bottom and anus hurt from it going through so quickly!!

Last month I decided we needed medical help again. We saw a different ped this time (my husband is military and the previous ped is going to a different base) so I gave the whole story: •irritable (I'm currently describing her as being a colicky toddler)

•tummy always hurting

•bloating

•chronic constipation

•sores on her tongue (geographic tongue, maybe?? It almost looks like burn marks, and I think it hurts her because she always has her fingers/hand in her mouth, not like teething, but like she's soothing her tongue.)

•and I also tacked on these few "bumps" on her skin which he said looked like molluscum (I thought molluscum looked like warts though).

He listened and seemed to empathize. I brought up celiac/gluten issues and he said it seemed like a good idea to test, because even without the ironic constipation, she's small, "almost FTT", then add in the chronic constipation and we did the panel that day.

She has a 2 year checkup/constipation follow up in a few weeks and the ped will give us a GI referral then. He wanted to wait until we have the celiac panel results so that I can take them with us to the GI and have something to go on, whether she's celiac or not. I do realize she's small, but didn't think it was "almost FTT". I haven't seen her plotted on the chart, but I looked up my old notes, and in 7 months (Dec 2012-July 2013, ages 17 months to 23) she gained 1 pound; she hasn't quite tripled her birth weight (7 pounds 4 oz at birth and 21 pounds at 23 months).

For the short-term, the ped prescribed similar to what we did last year: enema and then stool softener (lactulose this time, to see if she'll take it better than the miralax). She is taking it better, but I can still feel hard stool in her belly, and her belly literally feels like an inflated balloon. I may do another enema soon.

I'm anxiously awaiting the celiac panel results. I want to get in to the GI ASAP. If the blood panel is negative, we will see what the GI says. If the GI doesn't think it's celiac and doesn't want a scope, we will be going gluten free to see if there's an intolerance and maybe that will help the issues.

I feel guilty saying and feeling this, but I kind of want it to be celiac. Then, I have an answer, and we go gluten free, and ideally she poops and is happier (and grows)! But then for obvious reasons I don't want it to be celiac, because you don't want something to be "wrong" with your child (yet obviously there is already something going on!!).

If you read this, thanks! Sorry it was so long!

[mommy2krj]

Hugs Mama! That is exactly how I've been feeling with all of this with my little guy. He's six and I just got the negative endoscopy results from the nurse the other day. I have to write down my list of a million questions because he did test positive in the blood work. We see the doctor on Friday. Hopefully I get some answers then.

But I hear you.....I mean, I don't want my kid to have a lifelong battle with any disease but I want to know what is going on and why. So then maybe we can at least attempt to fix it. And I swear if I have one more doctor tell me to give him miralax and omeprazole, I'm gonna scream!

[nvsmom]

Poor thing. I had chronic "C" since babyhood too. Going gluten-free helped clear it up (thyroid problems slowed that down though). She has so many symptoms of celiac disease or non-celiac gluten intolerance (NCGS)... I hope she will be gluten-free inspite of what any tests show.

 

You could probably put her on a lighter gluten diet until the GI appointement and biopsy. All gluten is bad for those with gluten sensitivities, but lots of gluten is really bad. I imagine that a small handfull of Cheerios or half (or quarter) of a slice of bread would be more than enough for her tiny size. Less gluten is required before a biopsy because they are looking for damage done and not measuring levels of an autoimmune response in the blood. I believe a two week gluten challenge is all that is required for a biopsy versus the 8 or so weeks of gluten needed for blood tests.

 

It sounds like you will have to go gluten-free with her if you are going to continue bf'ing her (and good for you for doing 2 years - more is always better when it comes to bf'ing, IMO) since she was reacting when she was exclusively bf'ed. Have you been tested for celiac disease too? You might want to do that before going gluten-free so you will have accurate results.

 

Good luck. I wish you lots of fun summer distractions while you are waiting to hear the results.

[LoveMyDucklings]

The nurse just told me that all the results were either normal or negative.

I'm actually feeling kind of down about it, because my baby still can't poop and that was going to be my "simple answer". I gave her an enema last night, and she hadn't pooped since her last one 4 days before that. Gotta wait until next week to get the referral for the ped GI, then make an appt. In the meantime we are miserable.

[mommy2krj]

Oh hugs! Poor thing. I would have taken my little guy gluten free to if the results had come back negative. We are currently on a 3.5 month strict gluten free diet as he was a weak positive in the blood work and a negative with the scope but there was some scalloping which can also be indicative of Celiac.

See what the GI says and hopefully they can get it all figured out. It is pretty common to have false negatives in such young children....so I would definitely press to see the GI. Hopefully they can get you in soon. Aggravating, I know.

There's been too many things going on around here lately to even take a breather and see if my little guy is feeling better since going gluten free but it hasn't even been a week yet. And he had one incredibly nasty reaction to some cats yesterday and that usually takes a couple days to get over. Probably even more at this point since it was a strong reaction (hives and swelling eyes...the whole 9 yards!) and he hasn't reacted that strongly to a cat in a couple years! Lots of Benadryl....though his sister did treat him to frozen yogurt since she felt bad (he was with her at a friend's house). So....a nice tasty guilt trip.

[LoveMyDucklings]

Yikes, mommy2krj, hope your guy is feeling better soon!!

I'm thinking I'll call back tomorrow and ask for the GI referral to go ahead be put in. The sooner I have the referral, the sooner I can make the appointment.

I don't know if I should try going gluten-free and see what happens, or if I should wait until we see the GI, in case they want to do more tests that she would need to be consuming gluten for.

[mommy2krj]

Yeah...he was allergy tested a couple years ago after having a major incident in which we were very lucky that someone else had some adult strength benadryl as we didn't even know he was allergic at that point. It was instant hives and wheezing. This reaction took a little longer but it's been so long since he's had a reaction like that and he doesn't react to our neighbor's cat at all that I was a little lax with it all. His allergies seemed to be doing so much better over the last 9 months or so. *sigh* What can ya do. Wondering if going gluten free has anything to do with it....who knows. (I blame it all on my husband, the allergies, I don't have allergies like that. )

As far as the going gluten free....unfortunately I would wait until you see a GI doc. If they want to do a scope on her she's going to have to be eating gluten regularly still. I would make myself a nuisance and make them get you a referral right now to the GI doc...it's not like it takes any real work on their part! Ugh...that part frustrated me so much....even though I knew they were incredibly busy. Sure do wish they had a test that didn't require you to continue feeding something to your kid that could be making them sick....that's such a horrible feeling!

[LoveMyDucklings]

Goodness! No pet cats or animal jobs for him!

Yeah, too late to call now today, but I'll call tomorrow afternoon after my morning meeting. I'm assuming it'll take a while to get an appt with GI, so I want to call ASAP! It is awful to think that it's possible that what I'm feeding her is causing her pain and constipation. She's a baby (2 on Friday), she should be able to poop on her own! And also not be so cranky and growing is also a good thing.

[mommy2krj]

Goodness! No pet cats or animal jobs for him!

Yeah, too late to call now today, but I'll call tomorrow afternoon after my morning meeting. I'm assuming it'll take a while to get an appt with GI, so I want to call ASAP! It is awful to think that it's possible that what I'm feeding her is causing her pain and constipation. She's a baby (2 on Friday), she should be able to poop on her own! And also not be so cranky and growing is also a good thing.

Yeah and he so wants a cat (which wouldn't happen anyway as his dad is allergic to them and so is his sister!) so he colored a picture of a cat at school and asked me to hang it on the wall where he can reach so he can pet his pet cat. We have a dog...but he hasn't had any problems with them, thankfully. Just cats and trees....and now gluten.

 

I really hope they can get you in soon. Good luck....and definitely be the squeaky wheel!

[stanleymonkey]

Celiac testing is very unreliable in young children, our ped says under 5 you are very likely to get a negative result. When all the testing is over and done with it might be worth giving gluten free a trial. Chronic constipation was the main symptom for both my daughters, even miralax didn't completely fix it, the only thing that did was gluten free.

Gluten can have an impact on allergies. My eldest had an anaphylactic egg and milk allergy. Gluten free the disappeared. The only time my daughter ever has an issue with milk is if she has had gluten, then she'll get hives, thankfully no anaphylaxis. Our immunologist said when she accidentally gets gluten her body goes crazy and does what it knows best - hives from milk. When on gluten she also used to get hives with any fever, not anymore.

Good luck

[LoveMyDucklings]

Ped GI appt for July 30. Not too far away.

I'm feeling really stressed out though, because she has decided she won't take the miralax or the lactulose at all. I hate having to give an enema every 4 days for her to poop at all. She's gotten to where she doesn't go unless I give her an enema. :'(

[stanleymonkey]

We used to mix my 2 yr olds miralax in water without telling her we just gave her the water, she never knew when she did or didn't have it. You can mix it in anything just don't tell her her or let her see! As she is really backed up. We've put it in yogurt, soup, juice. When you see your GI make sure to ask about something to use besides ene,as, the bowel nerves start to rely on the signals from the Emma rather than the body after extended use, and then they forget completely how to work.

You could try lansoil it's just like jello. Talk to the doc or a pharmacist. That was our first course of action before miralax and before we knew about celiac disease, but beware things can come out as they go in!

[LoveMyDucklings]

That's exactly what I'm worried about with using enemas!

The problem with miralax is that you have to drink a lot of fluid with it, and she doesn't drink or eat much because she is always "full". Or at least, she doesn't eat/drink a lot predictably.

I've never heard of lansoil. What is that? Is it prescription?

[LoveMyDucklings]

I have the results in hand.

TTG IgG 1 ref range (11-26)

TTG IgA <1

Endomysial IgA negative

Gliadin IgA 1 ref range (0-20)

IgA 29

Gliadin IgG 2 ref range (0-20)

[frieze]

I don't see a ref range on the IgA, and it seems low....

[LoveMyDucklings]

Yeah, there isn't a ref range provided on the paper for the IgA.

[LoveMyDucklings]

There isn't a ref range listed on the paper.

[LoveMyDucklings]

Ped GI was just as unhelpful. Says she "senses that it's just stool withholding" and need to have her on enemas and stool softeners to get her over the anxiety and then she'll get better. She ran a CBC, thyroid, kidney and liver function, and checked vit d levels. No further testing. We go back in a month.

An enema a day for 3 days in a row, plus 1/2 cap of miralax in 4 oz of fluid, drank in 20 minutes, twice a day. After the 3 days, continue the miralax. She wants her pooping daily. If she doesn't, then increase the miralax. If that doesn't help, or she won't take more miralax, then an enema daily!

[seezee]

I was recently diagnosed with celiac after my doctor misread my lab results. I was tested 4 years ago when my daughter was first diagnosed and my doctor incorrectly interpreted the lab results as negative. My IGA was very, very low. I had a followup lab 4 years at a checkup that showed something but the doctor wasn't sure what it meant.  I went to a celiac doctor at Beth Israel celiac center who called the lab because she had given me non-standard tests. It turned out that I am IGA deficient and that negates the other negative results. He said a percentage of people with celiac are IGA deficient. They did another test and I think the test was called Anti-DGP and that was positive and then the biopsy was positive. The specialists advice is that many doctors and labs misinterpret results. It's good to work with someone who understands the different types of tests for celiac and what to look for. I think a lot of labs aren't all that sure either and that surprised me too. If the ped GI is not helpful then get someone else. We went to 3 ped GI's before there was someone nice that we could work with.

 

I really don't believe in "stool withholding". If the system isn't working somethings going wrong. 

 

I also have a friend who has celiac and her daughter has non-celiac gluten intolerance. 

[LoveMyDucklings]

Thank you seezee! It's so good to have support, and have someone tell you that you're right to so what you're doing, even if it's just over the Internet. My husband is deployed right now, so while he supports me, it's not the same as when he is home.

My daughter has a rash, which started as just a few dots. The ped thought it was molluscum (it doesn't look like pics online of molluscum), and the ped GI asked if she had a rash, I said yes, she didnt go any further with it, didnt even look at it. Now the rash is much worse, so I called her PCM yesterday. They put in a referral to see derm and also a second opinion with a different ped GI.

I'm thinking about having myself tested for celiac, as I've noticed my bowel habits don't seem right, and I feel "sick" after I eat, tired a lot, plus some migraines.