Could My Daughter Have Celiac? Constant Hunger

[e&j0304]

Well, we just got back from Ella's ped. office.

I am discouraged right now because her doctor did not seem to think she has celiac and did not want to test her for it. I guess since she doesn't have the classic symptoms (vomiting, diarrhea, etc.) then she probaby doesn't have it? Also, Ella has grown slowly, but it seems that she should be SO much bigger given the volume of food that she eats. Seems as though she must have a good metabolism...

Her doctor agreed to send her to a GI doctor at a university hospital here. This is not a pediatric GI, but is supposedly well-known. It will probably be 2 months before we get in with him and then we can see if he will test her.

At this point, i'm not sure what to think. I guess maybe I was hoping that we would have some answers and we could start doing something for her now. I almost just want to say "forget it" to the doctors and just put her on a gluten-free diet to see what happens. I know that will affect future testing, but I'm not sure I care. If we see improvement, isn't that all that matters??

Anyway, thank you all for your advice and support.

Shannon

[Guest taweavmo3]

Oh no! Poor Ella, and poor you! The doctor is clearly misinformed when it comes to celiac disease, as many are. Not all children have vomiting and diarrhea. My daughter didn't, she only had one stool a day and NEVER vomited. But, on biopsy, she had significant damage.

What tipped me off the most that something was not right were my daughter's moods. She was so irritable, it got to the point where we really couldn't take her anywhere. I couldn't even take a shower w/out her screaming outside the shower door waiting for me to get out. It affected our whole family. But, I think it was hard for the ped to understand how truly difficult life was for us on a daily basis.

Don't give up! You will find answers, it will just take finding the right doctor to listen to you. I'm terrible at being pushy, but you may have to be to get the test. I really don't understand why doctors are so hesitant to run the celiac panel. It's just a blood test for crying out loud! It's not as if you are asking them to do a lumbar puncture or something.

I don't think the doctors realize how they are messing with a child's entire future when they delay a diagnosis. Not all celiac disease kids experience developmental delays, but it does happen. My daughter is very behind for her age, and now we are in the process of navigating our way through the whole special ed process. This most likely could all have been prevented with early detection of celiac disease.

I think you are on the right track thinking that it's celiac disease, keep following your instincts until you get some answers!

[Merika]

Hi Shannon,

Ouch! Call the gi guy repeatedly until you get in. And while you're at it, ask your friend's for ped referrals and call them to get in. Be pushy. You are your daughter's only advocate. My mother and I would never have been diagnosed if she hadn't done all the research to find celiac, been insistant that the doc test her, and for that matter see a specialist no one referred her to. She is the queen of pushy when it comes to docs

Your doc is wrong about the symptoms. She does not need all them (or even any of them) to be suffering from celiac.

Tamara, many docs are very hesitant to run tests. It is the sad outcome of our healthcare system. They are financially penalized by most insurance companies if they run "too many" tests and make "too many" referrals. So unless a doc is 100% positive his referral/test is necessary, he often will refuse to run it.

This is where it pays to be pushy, or find another doc who is either not subject to these penalties (ie, doesn't take insurance....) or is somewhat unusual.

Shannon, if you push, you should be able to get a test within a week. Get creative. My midwife ran the test for my dh (We could have tried elsewhere, it was just most convenient to do there, and dh didn't like the specialist he saw.)

The test you can even order for yourself from www.promethius.com (I think - it should be Promethius Labs in San Diego). You want the 5 panel celiac test. It comes in a tiny box. Bring it to the doc. They do the blood draw, spin it, and send it off in the prepaid packaging. Very simple and costs you $290 + the office visit. You can then send it to your insurance if you want. Take it to your gyn, your allergist, anyone you have repoir (sp?) with who has the facilities and can do blood draw on a child.

Good luck, and remember when it comes to your dd's well being, pushy is good

Merika

[e&j0304]

I have some good news. Ella will be going to see the GI doctor in 2 weeks on Aug. 2nd. That is a lot sooner than I thought she would get it so we're happy about that. Maybe now we can get some answers.

What should I expect from this visit? Should I expect that they will run some tests on her while we're there. This doctor is in another city so I'm hoping they do as much that day as they can.

Just wanted to give an update. Thanks again for all the help!

Shannon

P.S. Ella's pediatrician was questioning the correlation between celiac disease and food obsessions or overeating. He said that celiacs may *think* about eating, but don't actually eat a lot like Ella does. Ella's food obsessions and overeating have been labeled as "hyperphasia". Her ped. was not sure if others with celiac disease were people who obsessed about food and actually ate a lot of it or if they just obsessed about it. What do you guys think about that?

[Guest taweavmo3]

But how does the pediatrician explain her failure to gain weight with her insatiable appetite? If she didn't have a malabsorption disorder, she should really be packing on the pounds I would think.

And, the comment that celiacs think about eating alot but don't, that's not accurate either. I know my little girl ate all the time, and I've heard other parents say the same thing. It was only after going on the diet that she finally ate normal portions, and I think that feeling "full" was a new thing for her.

My 15 month old, who I believe has celiac disease also, can eat a TON. For breakfast one morning he had two bananas, a nutra-grain bar and a waffle. He is always hungry, and gets very irritable if I don't feed him immediately after he wakes up in the morning or after a nap. He can definately put away and adult sized meal.

Anyway, I'll quit rambling. I'm so glad you have the GI appt. soon, and you don't have to wait ages for some answers!

[Jnkmnky]

Doctor's don't know everything. We're brainwashed to believe they do, though. Thank God for the internet! We can all be specialist in what ails us or our children!