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Slightly Frustrating Doctor's Appointment Yesterday

Poppi

By Poppi
in Doctors

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Poppi Enthusiast
Poppi
Posted

I was in with my 2 year old yesterday. It was supposed to be the day of her blood work and the end of our gluten challenge (I don't want to proceed with the biopsy at her age). But my doctor doesn't think she has celiac so didn't want to order the tests, instead she has referred her to a pediatrician who can take a look at her and decide what to do and in the meantime she wants me to keep up with the gluten challenge.

The gluten challenge doesn't seem to be making Lily ill other than the pica which is getting worse but it is making ME sick. Two year olds are bad at containing their mess. At the end of a gluten containing meal there is food all over her part of the table, on her chair, on her clothes, all over her hands and arms and face, in her hair, on the floor. Not to mention the crumbs in the kitchen and the times when she has run off to the couch with her sandwich before I could stop her. My symptoms have been getting progressively worse throughout her gluten challenge and I can't take it anymore.

The doctor was really pushing me to do a 3-4 month gluten challenge and have the testing done but I told her that the two times I've started the challenge I was bedridden within the first day and it took me weeks to recover so it's just not possible. Because I don't have an official test-confirmed diagnosis I am having a hard time getting her to take me seriously when it comes to testing the kids.

I told her there are 3 scenarios:

1) I don't have the test - I don't eat gluten

2) I have the test, it's positive - I don't eat gluten

3) I have the test, it's negative - I don't eat gluten

I cannot and will not make myself sick for MONTHS for the same end result.

Sigh. I don't know whether to continue with Lily's gluten challenge and risk my well being or to just go ahead with making the house 100% gluten free and not have the kids tested at all.

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IrishHeart Veteran
IrishHeart
Posted

In view of the fact that you have to make yourself--and your whole family sick-- for MONTHS for someone to take you seriously....

there are other less-invasive alternatives...how about genetic or stool testing??

BTW...Pica...that's a giant red flag, isn't it?

I know you would prefer a "REAL" diagnosis, but since you are deeply affected by gluten, a gluten challenge just makes it really difficult. I just read another woman's post about this same issue and she's at the end of her rope and she still has several weeks to go before biopsy. :blink: To me, this is almost barbaric to make people suffer this way. I wouldn't ingest gluten again for a million bucks. (Just my opinion.)

How much "proof" do doctors need? :blink:

In the end, are you going to remain gluten-free? Can you make sure your children get all the nutrition they need without gluten grains? Of course you can!! :)

Well, then...I guess you and your husband have some decisions to make. I wish you well, hon--because I imagine you have very busy days and do not need to feel lousy. :)

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I'm sorry your having such a rough time. ((Hugs))

Do you need the tests in order for your family to cooperate in keeping her gluten-free? Is there anyway you could just make her gluten-free because she is making you sick and then have her tested later when she enters school and starts eating gluten there? I know that might delay the inevitable as far as having to possibly go through a gluten challenge all over again when she's older, BUT at least when she gets older 1. she can be taught to keep the gluten contained so it doesn't make you sick and 2. She can TELL you if she gets sick from the gluten challenge and you can discontinue it then and there (perhaps even get a diagnosis based on the challenge). Not giving her gluten will not hurt her nutrition wise and it sounds like that's what you need to do anyway in order to make it safe for YOU at the very least.

Poppi Enthusiast
Poppi
Posted
  • Author

Thanks ladies. My hubby is working out East this week so we'll definitely have to have a discussion when he gets home. When he is home he prepares the kids' gluten foods and cleans up after. Trouble is that he goes out of town fairly often for work. He'll be gone for anywhere for a couple of days to a couple of weeks and it's hard for me to cook for the kids during his trips because they want the same foods they are used to Dad making for them.

I'm still not sure if Lily's pica is a celiac symptom, some other vitamin or mineral deficiency not related to celiac or just a weird thing she is doing right now. I would really like to know for sure one way or another which means continuing the gluten challenge? Maybe?

My 16 year old son won't go gluten free unless he has a test result saying he must. The good thing is that he has his own kitchen downstairs that he shares with the older girls and can eat all the gluten his little heart desires down there without making me sick.

I don't know what to do.

IrishHeart Veteran
IrishHeart
Posted

Thanks ladies. My hubby is working out East this week so we'll definitely have to have a discussion when he gets home. When he is home he prepares the kids' gluten foods and cleans up after. Trouble is that he goes out of town fairly often for work. He'll be gone for anywhere for a couple of days to a couple of weeks and it's hard for me to cook for the kids during his trips because they want the same foods they are used to Dad making for them.

I'm still not sure if Lily's pica is a celiac symptom, some other vitamin or mineral deficiency not related to celiac or just a weird thing she is doing right now. I would really like to know for sure one way or another which means continuing the gluten challenge? Maybe?

My 16 year old son won't go gluten free unless he has a test result saying he must. The good thing is that he has his own kitchen downstairs that he shares with the older girls and can eat all the gluten his little heart desires down there without making me sick.

I don't know what to do.

WIKI says: The scant research that has been done on the causes of pica suggests that the disorder is a specific appetite caused by mineral deficiency in many cases, such as iron deficiency, which sometimes is a result of celiac disease[4] or hookworm infection.

If that helps.

I know someone on here had Pica from iron deficiency anemia.

You face a tough decision, hon. If they are all on gluten at this point, I would think that's enough for them to do the test, though...right? As for you, I think you know you won't be doing the gluten thing again. :)

stanleymonkey Explorer
stanleymonkey
Posted

my 2 yr old has started with pica, she tries anything to get into rice, pasta and flour, she even tried to eat a gel cold pack

her cousin was the same and it turned out to be anemia

Poppi Enthusiast
Poppi
Posted
  • Author

Lily is eating DRYWALL! She scrapes it right out of the wall with her teeth.

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IrishHeart Veteran
IrishHeart
Posted

Lily is eating DRYWALL! She scrapes it right out of the wall with her teeth.

POPPI, honey--drywall often contains GLUTEN!!! A carpenter told me this just a few days ago. :blink:

sb2178 Enthusiast
sb2178
Posted

Yeah, at the very least, pica should sent your toddler off for anemia testing. Pica is pretty well associated with anemia in pregnant women, although less so in the general population. Even if the doc won't do celiac, at least get the poor baby tested for anemia.

Poppi Enthusiast
Poppi
Posted
  • Author

POPPI, honey--drywall often contains GLUTEN!!! A carpenter told me this just a few days ago. :blink:

Oh heck. :blink:

So how the heck do I stop her from eating drywall once we go gluten free? If she keeps munching away at it she'll never be gluten free and never get better (if gluten is in fact the problem). She does it in her room after we tuck her in for the night as well.

Yeah, I want an iron test pronto but my family doctor (who I have always thought was quite competent) wants her to see a pediatrician before ordering any tests.

IrishHeart Veteran
IrishHeart
Posted

Oh heck. :blink:

So how the heck do I stop her from eating drywall once we go gluten free? If she keeps munching away at it she'll never be gluten free and never get better (if gluten is in fact the problem). She does it in her room after we tuck her in for the night as well.

Yeah, I want an iron test pronto but my family doctor (who I have always thought was quite competent) wants her to see a pediatrician before ordering any tests.

Why can't the family doc just run the blood work for iron deficiency anemia and for celiac? Does she know about the pica? For pete's sake....What the heck is she waiting for?? The anemia causes the pica and what causes anemia in a small child?? Little ones are not anemic for no good reason (it's not like she loses blood anywhere, right?) ARRGH! Don't get me started on doctors :rolleyes:

Going gluten-free will stop that behavior --if it is related to celiac. Between your symptoms and hers--what more does she need?

Not sure what to do about the drywall---ask hubby how to cover it? Change bedrooms with another child??

mushroom Proficient
mushroom
Posted

Sara. I'm with Ginny. I know you said you like your doc but what the heck is wrong with her??? Just because she has a hunch that it is NOT celiac she refuses to test her for celiac. I thought tests were to eliminate possibilities as much as to confirm them, and that is the strongest possibility you've got going at this point for her anemia and pica. To heck with her hunches. Demand the tests! ! - both of them!! and tell her to stop mucking around with Lily's health based on whims and stop messing up your family life. Be assertive!!

sreese68 Enthusiast
sreese68
Posted

So how the heck do I stop her from eating drywall once we go gluten free? If she keeps munching away at it she'll never be gluten free and never get better (if gluten is in fact the problem). She does it in her room after we tuck her in for the night as well.

You may just have to sit in her room with her until she falls asleep. Or get a video baby monitor, so you can watch her at all times until she goes to sleep. If she does it in the morning when she first wakes up, you could move her bed into your room temporarily. All this would be a pain, but hopefully, it'd be temporary.

And I hear you on the crumbs! I tried letting the kids eat gluten the first two weeks of my diet, and the stress about all the crumbs drove me crazy! On the down side, I can't get an accurate blood test for them now.

Poppi Enthusiast
Poppi
Posted
  • Author

So after our conversation about how gluten affected me and the family history (my Dad is celiac and my Mom is gluten intolerant)she still wanted me to do a gluten challenge and get tested. When I refused she said, "Well, you probably have celiac so you should just keep up the dietary thing." :rolleyes:Really?!

It takes for freaking ever to get a doctor's appointment here. Socialized health care is awesome but slow. If I called first thing tomorrow it would still be 2 weeks before I could get an appointment and who knows how long to get the appointment with the pediatrician.

I'm really thinking we just go ahead with our plans to make the house 100% gluten free right away and then she can get the iron test at our next appointment. We can do a gluten challenge and testing when she's older if we want to.

I suppose on further thought I would have to consider the accelerating pica as a failure of the gluten challenge. And man do her BMs stink when she's eating gluten!!

Poppi Enthusiast
Poppi
Posted
  • Author

You may just have to sit in her room with her until she falls asleep. Or get a video baby monitor, so you can watch her at all times until she goes to sleep. If she does it in the morning when she first wakes up, you could move her bed into your room temporarily. All this would be a pain, but hopefully, it'd be temporary.

And I hear you on the crumbs! I tried letting the kids eat gluten the first two weeks of my diet, and the stress about all the crumbs drove me crazy! On the down side, I can't get an accurate blood test for them now.

Yeah, it's been 2 days since she ate drywall so I'm hoping maybe she'll stop but I'll be keeping a super close eye on her. I've put that super slippery packing tape over the spots she has scraped away and so far she hasn't started any new ones.

Kids + gluten is a disaster for us, eh? My 5 year old is better but still not perfect. He understands allergies because he is allergic to food colouring so he knows I can't have bread or his spaghetti and he needs to try to contain his crumbs. He's going to have to go gluten free too though because Lily will steal his food.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

How big is her room? Can you hang some heavy blankets around the bottom of the wall so she can't get to drywall? Another otpion of course is to add wooden paneling but that would be more permanant and costly. I'm thinking if you have a bunch of old blankets or sheets you can just nail them right into the wall (putting the nails high enough so that she can't reach them of course). Otherwise, I think you either need to have her sleeping in your room with you so you can keep a closer eye on her. This eating drywall is really serious. I can't beleive your dr is not doing any testing!

kareng Grand Master
kareng
Posted

Hey, Hon! I came to this late. I agree with everyone on the vitamin deficiency making her eat odd things. Is your house more than 35 years old ( approx)? The bottom layers of paint may contain lead if so. One more thing to bring up with doc.

There is a spray to keep dogs from chewing on things called " bitter apple". Look at the ingredients but I think it's safe for humans. You could spray it on the wall where she is chewing. It's supposed to be very bitter. I think there are hot pepper ones too. Might help get her out of The habit.

I know when I was very anemic, I craved weird stuff. I just knew not to eat dirt or drywall or whatever.

I don't know if it works this way in Canada but this can work in the states. Take her to the emergency room of a full service hospital or children's hospital, even better a teaching hospital, during the week day. " she just ate drywall! Is she poisoned?". Whith the doctors already there or in the adjacent office building, many times the docs will pop in at the emergency. Then give you an appointment for 1 or 2 days in the office.

This worked. J got fiberglass glue in his eye. Looked ok at the ER after rinsing but he got into an eye doctor the next morning for a follow-up. My hub goes to her & he has to schedule 2 months in advance.

Takala Enthusiast
Takala
Posted

Pica is caused by cravings for the missing minerals. Give the kid a spoonful of blackstrap molasses a day along with a gluten free multivitamin for children (B vitamins are tied into this) and that should help, once you get her off the freaking gluten. Get a new cast iron pan and dedicate it to cooking gluten free, and start making some food in it for her to eat, also. All real low tech and effective in getting more iron available.

Poppi Enthusiast
Poppi
Posted
  • Author

Thanks for the advice.

She is gluten free now (as of yesterday) because I need to get back to where my health was before my husband went away for work. I just can't be handling and cooking gluten foods. I will be getting her vitamin and mineral levels tested but we will have to wait a couple of years to repeat the gluten challenge.

We've had almost a week now with no drywall eating so I am hoping that has passed. I do have a dedicated gluten free cast iron frying pan, now I just have to think of foods she will eat that I can cook in there. She is like most 2 year olds and lives almost entirely on baked goods, oatmeal, fruit, cheese and yogurt. It's not as bad as it sounds as the baked goods are homemade and gluten free, the oatmeal is gluten free and the yogurt is homemade. My mom can get her to eat chicken sometimes and we have had mixed success with adding beef to pasta sauce.

Thanks again. Hubby will be home from Ottawa tonight so we'll have to figure out our plan of action this weekend.

IrishHeart Veteran
IrishHeart
Posted

You're doing a great job, Sara!! This is not easy for me --and I only take care of hub and me!!...so give yourself a huge pat on the back for all you do. You're saving your own life and your children's. :) YOU take care, hon!!

stanleymonkey Explorer
stanleymonkey
Posted

i agree with the er thing, next mouthful of drywall, go to a kids hospital,

IrishHeart Veteran
IrishHeart
Posted

i agree with the er thing, next mouthful of drywall, go to a kids hospital,

Yeah, the ER idea is pretty good...it will get you a referral a lot faster!!

kareng Grand Master
kareng
Posted

Yeah, the ER idea is pretty good...it will get you a referral a lot faster!!

If its a teaching hospital, you might get your Gi, allergy, etc consult right there in the ER.

IrishHeart Veteran
IrishHeart
Posted

If its a teaching hospital, you might get your Gi, allergy, etc consult right there in the ER.

even better--good thinkin, Kweenie!! ;)

kareng Grand Master
kareng
Posted

If its a teaching hospital, you might get your Gi, allergy, etc consult right there in the ER.

Should have added - During regular work hours - like Monday - Friday 8m to 5 pm

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