Frustration

[crittermom]

Hi everyone,

I usually write about my dd but we have gotten things pretty well under control. (Although she got glutened at school ) Anyway tonight I need some advice on my son.

When Katharine was diagnosed positive with blood test and biopsy I had Michael tested. His celiac tests came back negative which is not surprising as he had no symptoms at all and was only 1.5. Katharine's ped gi then wanted to run the gene test which we did and she told me that he is positive for the celiac gene. I don't know which it is and I wasn't able to get through today to get an actual result, she just told me it was positive back then and to keep a very close eye on him for any changes. Fast forward to 5 weeks ago.

I have noticed that Michael is starting to poop green... ALOT... like 5 bms a day most days where before it was one or two. He is extremely sensitive, screaming and crying about everything, not in anger like terrible 2s but more in intense distress with actual tears. He gets 12 hours of sleep every night without waking and starts having meltdowns before he even leaves his bed. Before he was a really happy go lucky boy. He has stopped eating everything he likes and only wants crackers, pizza crusts, and carrots. Occaisionally I can get him to eat chicken or bacon which he usually loves. Peas which he would ask for seconds and thirds of are now a battle. He is not cutting teeth and seems to be fine otherwise.

I called the gi, they said take him to your ped and get him checked out and make sure there is no cold or virus you are missing, makes sense. They said while you are there ask them to order up the celiac panel. (They found it in Katharine first and referred us to the gi with it so I have total trust in them as far as that goes) He checked out fine except for some minor nasal congestion due to seasonal allergies. She put him on zyrtec and his nose has cleared up but nothing else has gone back to normal. His belly is ever so slightly rounder than before but is very hard. We had the blood tests done last week, I know they are back since I called the lab to check but I still haven't heard back from the dr office. I called today but no one called me back and their policy is that they will call back in 24-48 hours. My little man is not feeling good and now I have to wait until Monday to get an answer.

Ok now I will stop rambling and get on with it... Do I make an appt with her and tell her michael is still "off" and get the results that way. And if they are negative, do I go enterolab or do I just do gluten free without a dx. If I do that will insurance pay for blood testing after the fact if I want to see if he is doing ok? Or will the blood tests even matter since he was never dx positive to begin with. I am going crazy with the not knowing and a little boy who obviously isn't feeling quite right.

BTW this is the same office who has yet to get me the results of my sleep study that was done 2 months ago. The ped is amazing, she is a wonderful diagnostician who finds things extremely quickly without a lot of testing however her office staff can sometimes be lacking. My DH thinks we should get a new ped but I am hesitant because the kids love and trust her and she has nailed everything with all of us spot on. Lots of confusion if you can't tell , any advice would be appreciated! Thanks so much!

[Ridgewalker]

Melissa,

Oh, how incredibly frustrating! I just hate that kind of thing, especially on Fridays- now you're stuck till Monday From what you describe though, I'd stick to your guns about not switching doctors. If she's awesome, stick with her despite the slack office staff. You might have to make a "pest" of yourself to make up for their shortcomings, but I think it's worth it if the doc is great. (I put up with the same stuff, but I refuse to change docs, too. We've been with her since Lucas was born, and now she's our family doc and my parents' too- in fact she's also the one who initially suggested Celiac to my mother, and sent her to the GIs with that in mind.)

My first instinct was to say, Keep trying to get the results over the phone to avoid having to pay for another appt, but... I bet that no matter what the results are, you'll want to discuss them with her. How long does it usually take to get an appt with her? If they usually get you in within a day or two, maybe it would be better to just make the appt. If it takes longer than that to get in to see her, keep pestering them to give you the results over the phone in the meantime!!!

For awhile, I was sure Enterolab was the way to go, and we still probably will, but I've been hearing a few not-so-great things about them lately as well... Probably a conversation for another Topic, but... I don't know, I'm not as sure as I used to be about them??? What is your opinion on Enterolab?

As for the insurance, I have no idea... we've been sludging through all our health problems with no insurance- Everything's been out-of-pocket.

I'm sorry the kids have been feeling bad- hugs!

-Sarah

[crittermom]

Hi Sarah,

Thanks for such a quick reply. I can usually get into her the same day I call or the next. I also just remembered that dd has weight check on Tuesday, she lost a pound at her last visit, so I can bug them then if they don't call on Monday.

I am not sure what to think of the enterolabs. I did some reading on them and they seem valid enough, but I am wondering why the process isn't used more to diagnose if it is that right on? Has the medical world not caught on/up yet? Also if I find out he is wheat intolerant and not celiac it would still be the same remedy anyway, so I guess instead of doing the expensive lab I could just try glutenfree and see how that goes. Although I am not one to feel comfortable in limbo. I am definitely more of one to want a solid black and white diagnosis, good or bad it is just the way I am! PM me or start a new topic on the things you have heard about enterolab if you don't mind, I would like to hear your thoughts on it as well.

I can't imagine doing all this doctor stuff without insurance. Ours is so so now that it is not the military insurance anymore, we went back to our civilian insurance when DH got home. Good luck to you. Thanks again for your advice, I feel better about sticking it out with my doctor, it is nice to know another mom feels the same!

[Nikki'smom]

I am so sorry you DS isn't feeling well. Honestly i would call the DRs office and ask for the dr to call you back and talk to them about his office help and how they don't respond like you feel they should. He /she may not even realize his staff is lacking in 'customer' response.

If your son is truley still off take him in something else may have cropped up since the last time you went in.

Also could the Zrytec be upseting him. The reason I ask is because my DS had a bad reaction to zyrtec that I didn't get for a few yrs! I know bad mommy! He has severe allergies and has been on zyrtec since he was 15 months old. He was always a little slow and loopy very lazy, no energy,whined how hard it was to do anything physical. I just thought it was his personality we all just joked and called him pokey. His allergies were so bad he was also on many other allergy meds at the same time so much so we realized it was nut having him on so many and opted to have his tonsils out. They were HUGE and so where his adnoids. Doing this we hoped he wouldn't need allergy meds. It did help reduce the amount he needsed but the dr still wanted him on zyrtec. Then Some one mentioned what Zytrec did to them. It made them loopy, tired and achey and couldnt' focus. So they tried Claritan and they said it worked wonders. So i figured i would give it a shot. OMG My son is a different child! He wasn't to run, he wants to play and be physical and is sharp ans a tac now! He is now 5 and we just got him off the zyrtec 2 months ago! He is so much better now it is amazing! i feel awful he was on zyrtec so long and I had no clue what it was realy doing to him! My DD has taken it and has been fine! Go figure. Thankfully we figured it out. So needless to say both kids are n claritan for their allergies.

I wish I had beetter advice for your DS. Just hope the little guy feels better soon and you get the answers you need!

[crittermom]

First of all thanks for the responses. Nikki's Mom, I don't think it is the zyrtec only because this was happening before we started that med. But interesting you said that because a close friends son and my nephew both got totally whacked out on it as well. BTW don't feel bad about the meds, I was glutening my dd for almost a year and didn't pick up on it! Thanks for the advice.

Thought I would just add an update for anyone who was interested. I finally got Michael's bloodtest results back, after going into the office to get them. His IgG was 15 and his IgA was 5. I called the GI and left a message with the nurse about the results and let her know I wanted to ask her about the green poop. This is where I LOVE my ped GI office. The nurse didn't call me back yesterday when I called because she spoke with both ped GI's in the office about Michael's case. Both doctors decided they wanted faxed copies of Michael's growth records and panel results. (those were suppose to have already been faxed but apparently they weren't, it may be time for a new ped) They also were in agreement that they wanted Michael in for a full reevaluation. He hasn't been seen in a year as he had outgrown his reflux. Here is the best part. The next appt available is December. The receptionist said they want to see him sooner and was going to speak with the Drs to find a good place to overbook him so he can get in sooner, which is great because he woke up at 6 AM telling me in tears that his belly hurt. She is going to call tomorrow.

Sometimes the planets are in alignment and lady luck smiles on you.....

[Nikki'smom]

Wow it is interesting you said yoru nephew had a bad reaction to Zrytec too. My dr game aus Claranex samples but I want to wait to give him them until he is over his sinus infection so I can really make sure he doesn't get loopy again.

If it makes you feel better i ahd no clue I was glutening my DD too! After her blood tests came back positve and we were waiting to get our scope I gave he EVERy gluten filled thing she loves so she could at least have them one more tiem! Sad huh?

I am very glad you are able to get into the dr sooner! Sorry your little ones tummy hurts! Keep us posted!

[confused]

First of all thanks for the responses. Nikki's Mom, I don't think it is the zyrtec only because this was happening before we started that med. But interesting you said that because a close friends son and my nephew both got totally whacked out on it as well. BTW don't feel bad about the meds, I was glutening my dd for almost a year and didn't pick up on it! Thanks for the advice.

Thought I would just add an update for anyone who was interested. I finally got Michael's bloodtest results back, after going into the office to get them. His IgG was 15 and his IgA was 5. I called the GI and left a message with the nurse about the results and let her know I wanted to ask her about the green poop. This is where I LOVE my ped GI office. The nurse didn't call me back yesterday when I called because she spoke with both ped GI's in the office about Michael's case. Both doctors decided they wanted faxed copies of Michael's growth records and panel results. (those were suppose to have already been faxed but apparently they weren't, it may be time for a new ped) They also were in agreement that they wanted Michael in for a full reevaluation. He hasn't been seen in a year as he had outgrown his reflux. Here is the best part. The next appt available is December. The receptionist said they want to see him sooner and was going to speak with the Drs to find a good place to overbook him so he can get in sooner, which is great because he woke up at 6 AM telling me in tears that his belly hurt. She is going to call tomorrow.

Sometimes the planets are in alignment and lady luck smiles on you.....

So do those results mean positive or negative for celiac. You didnt put the reference range so im not sure if they are negative or positive.

paula

[crittermom]

So do those results mean positive or negative for celiac. You didnt put the reference range so im not sure if they are negative or positive.

paula

Hi Paula,

Sorry the ped's office said since is was under 20 it is considered a negative. Although I am not sure what it was last year this time when he was tested. If it was in the single digits it may be on the rise and maybe that's why they want to see him? Thanks for the reply!

[happygirl]

Celiac lab tests for children under 2 are not as reliable as when they are older...so a negative doesn't mean a negative, necessarily.

[happygirl]

Celiac lab tests for children under 2 are not as reliable as when they are older...so a negative doesn't mean a negative, necessarily.

Looks like they didn't run the FULL celiac panel, either. Ask them why they didn't run the tTG and the EMA---those are the two most specific/sensitive to Celiac, NOT the AGA.

AGA Iga

AGA IgG

tTG

EMA

Total IgA