Need Your Advice - Getting Ready To See Ped. Gastroenterologist In September

[mamatide]

Back in Feb/March of this year, I brought then-4yo DD to our GP and told him that I needed to know what was causing her stomach pain and perpetually-bloated belly. She just didn't look right to me and the toddler tummy on an almost-five-year-old was beginning to worry me.

He mentioned Celiac disease as a possibility and said we'd be running some blood work first to see what the next course of action would be. Blood work came back, end of March as "indicative" of Celiac but not overwhelming but also with a high sedimentation rate (which he said was not indicative of Celiac... not sure on that one personally).

He said that the next step was a referral to a Ped. Gastroenterologist but they're scarce around here and the wait would be a while. I called the children's hospital who said that appts were 4-6 weeks if a biopsy had been ordered, but 6+ months for a consult. I pushed my GP to just order the biopsy but he said his hand were tied and he couldn't do it without the consult.

Meanwhile DD was writhing in pain every night and DH and I had been reading up voraciously on Celiac disease, quite excited that adjusting her diet could be the solution to all of her pain (and we learned that so many other things about her were symptoms of Celiac: completely under the growth curve at 1year old, unexplained anemia at 1 year of age, skinny legs, arms (but large bloated hard gut), pain all the time, yellow poop with food pieces in it, a very very negative outlook (downright nasty child), transluscent skin and not putting on any weight at all for about a year.

Several calls to the Children's hospital said that we would have to wait for 2 of their ped gastros to come back from maternity leave before we could hope for an appointment.

So DH and I decided to go gluten-free and keep a diary (photo and symptoms) of her progress. We started April 1st.

It has been remarkable. She's really 90% better, most symptoms gone, poop normal, with some intermittent pain that we're not sure what to attribute to.

Now I get the call for an appointment - it's late in September.

So what we'd hoped to be able to do was to document it all, bring all that to the Ped Gastro whenever we got the appt and maybe to let her eat something gluten-y after 3 months to see what happens to her. I've seen her glutened (I'm pretty sure) and doing that on purpose just sounds downright mean. She has bathroom accidents (she asks me to find some panties that I don't care if she ruins -- poor pet)

What would you do now in our shoes? I've stopped really documenting much besides body measurements in her diary. Her weight can go up 2lbs in one day so that's not really all that reliable, but we're on average 1lb up and a quarter-inch on each thigh.

I'd like to know why she still has some pain intermittently so we're banning all gluten from the household for the next 2 months. I've noticed she has her hair in her mouth a fair bit so I've got to reexamine our shampoo choices - can someone give me their kids shampoo recommendation to make it easier for me? - I've tossed our lightly-scratched teflon pan. All else has been replaced. She's home with me for the summer so this is our golden opportunity to try to isolate her from all gluten to be sure we're not cross contaminating her or giving it to her in some hidden form.

I still want to talk to the Gastro - to go over all we've done despite having ruined our chances of screening via biopsy. Can you think of an approach we can take between now and end of September? If this were you, what would you do in preparation for this appointment?

Thanks for any and all thoughts, advice.

[wolfie]

I think that you are definitely on the right track. I am glad that you have seen such a great improvement in your daughter! I would continue to keep the diary and record all of the progress that you are seeing and then show it to the GI. If she is still having some pain when you see the GI, maybe they can help figure out why. She obviously has a problem with gluten, whether it is Celiac or gluten sensitivity you may never know..the end result is the same....a gluten-free diet. Does she eat dairy? A lot of Celiacs can't handle dairy until their intestines have a had a chance to heal. Maybe try to eliminate that for a week or 2 and then re-introduce it to see how she does.

Good luck!!! Good for you for making sure your DD gets better!!! (((HUGS))))

[celiacgirls]

I am in the same situation. My younger daughter has seen a Pedi GI who ran the blood tests and they were negative. The GI's next step would be to do the endoscope and look for other causes and maybe celiac, I'm not sure about that part. Since then, we have done the Enterolab test (positive) and done the gluten-free diet. Now my daughter is better. I called after getting the Enterolab results and was told by the nurse that she didn't think my daughter needed to be gluten-free. No matter that she feels better on the diet and we have a family history of celiac.

My plan is to keep her on the diet (of course) and take her back to this doctor and ask that she be treated as a celiac patient, meaning whatever tests they do like anemia, diabetes, etc. I won't have them do the annual blood test to see if she is maintaining the diet because that was never positive in her anyway. I see no reason to put her under for the endoscopy or do a gluten challenge. I just feel the need for a doctor to oversee her care. In case there is something else wrong with her, I want a doctor involved.

My other daughter has never been to a GI and I will take her to a different one if this first doctor doesn't agree to this plan. In our city, there are only a few pedi GI's and they are all in the same practice so I don't want to change my daughter without going to the first dr. again.

My daughter has been gluten-free for much longer than I have and she would sometimes have tummy problems that I thought couldn't possibly be from gluten. Now that I am on the diet, too, I see that you can think you are doing everything right and still get it from somewhere. It is easier for me to tell when she has been glutened because we are eating a lot of the same things.