Any of you ever care for a pediatric celiac disease pt? Need your help

morte, LPN, LVN · Apr 3, 2009

also think psych.....this diet is going to impact their social interactions for the rest of their lives.....

djandkmommy · Apr 3, 2009

Hi - I'm not a student yet so I'm not sure if this applies but I have a child with food restrictions (not celiac thank goodness) so I have a little first hand knowledge. Is education within the scope of your duties? This is key for a pedi patient. They need to understand why they can't have wheat based products, etc. Not just, it will hurt your tummy. The peer pressure as they age to try new things are strong for these poor kids and the more they understand about the danger to the bodies, the better.

Hope this helps.

soccerfan12 · Apr 5, 2009

First off if they maintain their gluten free diet they won't have any bowel problems. It may take a while for their intestines to heal but after some time on a gluten free diet the digestive issues will stop. I should know, as I have celiac disease.

Also this isn't an allergy! It's a food intolerance. Unless they have been tested and come back positive for a wheat allergy test, they can still be around foods with wheat,gluten,barley,etc they just can't eat it. They can still sit with their friends at the lunch table,resturant,etc.

I've been diagnosed for 3 years now and after only 1 week on a gluten free diet I felt tons better. 6 months later I was back in school and getting the best grades ever. It was great not feeling sick anymore. The diarrhea will stop after time on the diet. The whole reason for getting it is because the gluten,barley,etc is upsetting the intestines.

As for social problems, never had any problems. I did have to explain some things to friends but I've never had social problems with this disease. There are many options in terms of eating out, brining lunch to school,etc. It's not a social death sentence people, the patients will be fine.

The patient would never need any pain meds. As long as you follow a gluten free diet, very strict, if you eat something with gluten,wheat,or barley in it you will get sick! If you don't follow the diet you can end up with severe nerve problems,stomach cancer etc.

There are many foods to eat with celiac disease, I can still go out to resturants, and live a normal life. It has never held me back. I can't stress enough that they can still be a normal kid.

The patient needs to understand that they have to follow this diet for the rest of their life. If they don't they can be in for some severe medical problems, way beyond just having to watch what they eat. They need to learn to read labels, read everything!!!! And I mean everything!! Play-dough has wheat in it! You really have to read every single label on everything. It may be time consuming but its better than being sick for 3 days. I have had slip ups and ended up being sick for 3 days and it was hell.

I was able to graduate high school, I actually graduated a year early, and now I'm in my 2nd year of college. I was able to run cross country, play soccer, and swimming all while having Celiac disease. I can still eat foods like pizza but I just make it myself. It even tastes and looks like the real thing according to my dad and brother who have tried it and don't have the disease. Buying food can be expensive, especially special breads, but I actually haven't had bread in a long time. It's too expensive and I've learned to be ok without it. Fruits,veggies,chicken,beef are all gluten free. Some mainstream cerels like Trix,Kix, and Rice Chex are all gluten free. Milk is fine and so is ice cream except for the obvious ones like cookies and cream.

Celiac.com is a great resource if you want more info.

soccerfan12 · Apr 5, 2009

also think psych.....this diet is going to impact their social interactions for the rest of their lives.....

I disagree. Unless the patient has had previous issues of social anxiety,depression,etc then they shouldn't need to see a psychologist. Celiac or any other form of diet restrictions doesn't make someone a hermit. They may have to plan ahead (eat before or bring snacks with them) if they go to a party or friends house but it would never hold them back from social situations.

If the patient learns why they can't eat certain foods and the consequences of eating them (severe stomach cramps,vomiting, possible nerve damage and cancers if they ignore the diet longterm) then they should be fine. I've had no problems going to people's houses or any type of social setting. I know that I can't eat pretzels and pizza and if I do want those things then I bring my own or eat before I leave.

A patient with any food restrictions is still the same person they were before they were diagnoised. Now they just have to watch what they eat. Its not that hard. It may be hard for a peds patient, but believe me, a few slip ups and you'll learn to read food lables and avoid eating something that will make you sick.

NamasteNurse, BSN, RN · Apr 6, 2009

I am somewhere in the middle on this subject. I am an adult who has celiac and I also teach at a school where several of the teenagers have it. It's not a death sentence and not depressing per se, but it is a pain when socializing and for kids and teens who may not understand the full impact of the disease, it's hard! There's gluten hidden in a lot of foods you wouldn't think of like yogurt and puddings, gravies, and soups. It's hard to go out to dinner because you stick out with your special requests and the rest of your party feels sorry for you or maybe even annoyed at all your special needs and maybe guilty for eating foods you can't have in front of you. There's a lot of social issues.

Most of the foods that kids and teens eat are rife with gluten, it's not that easy although it is getting easier as more people are diagnosed and more gluten free foods become available.

As a nurse, (I'm a nursing student) teaching is of course a huge part of you scope of practice. I'd find safe food lists for your pt and talk with them and their parents about substitutions. You can also teach about how celiac effects the digestive tract by destroying the villi in the small intestine and preventing the body from absorbing nutrients. Many people don't get that part, they think it's "just" a digestive problem. I went undiagnosed for my whole life, (I was DX at age 48) and found out I have pernicious anemia, almost no vitamin D, osteoporosis, Because my body "stole" calcium from my bones, and several other major health issues. So celiac is serious, it needs to be addressed and you can happily and healthfully live with it, but it's not that easy and it takes committment.

For a kid I'd also say that the parent has to try and not 'feel bad' that the child can't have certain foods and learn how to make some typical kid foods from scratch celeiac free. It can be done with planning.

morte, LPN, LVN · Apr 6, 2009

I disagree. Unless the patient has had previous issues of social anxiety,depression,etc then they shouldn't need to see a psychologist. Celiac or any other form of diet restrictions doesn't make someone a hermit. They may have to plan ahead (eat before or bring snacks with them) if they go to a party or friends house but it would never hold them back from social situations.
If the patient learns why they can't eat certain foods and the consequences of eating them (severe stomach cramps,vomiting, possible nerve damage and cancers if they ignore the diet longterm) then they should be fine. I've had no problems going to people's houses or any type of social setting. I know that I can't eat pretzels and pizza and if I do want those things then I bring my own or eat before I leave.
A patient with any food restrictions is still the same person they were before they were diagnoised. Now they just have to watch what they eat. Its not that hard. It may be hard for a peds patient, but believe me, a few slip ups and you'll learn to read food lables and avoid eating something that will make you sick.

there is def. a psychological aspect to this issue.....as was explored in the post after this one....and for some there is the grieving of the lost self....etc.....and dont forget to include rye in your list of nonos.....and american grown oats may also be an issue....most cereals from the common brands prob. are made in factories were cross contamination is a potential issue....cosmetics and soaps lotions are all issues....some persons present with constipation not diarhea....good luck

vintagestudent · Apr 6, 2009

i disagree. unless the patient has had previous issues of social anxiety,depression,etc then they shouldn't need to see a psychologist. celiac or any other form of diet restrictions doesn't make someone a hermit. they may have to plan ahead (eat before or bring snacks with them) if they go to a party or friends house but it would never hold them back from social situations.
my apologies, i didn't mean all newly diagnosed cd pts would need to see a psychologist per say...just that they'd need to find a way to accept & work with the new life-long changes and might require professional assistance. i apologize for not being clearer on this one...chalk it up to a tired brain.
if the patient learns why they can't eat certain foods and the consequences of eating them (severe stomach cramps,vomiting, possible nerve damage and cancers if they ignore the diet longterm) then they should be fine. i've had no problems going to people's houses or any type of social setting. i know that i can't eat pretzels and pizza and if i do want those things then i bring my own or eat before i leave.
a patient with any food restrictions is still the same person they were before they were diagnoised. now they just have to watch what they eat. its not that hard. it may be hard for a peds patient, but believe me, a few slip ups and you'll learn to read food lables and avoid eating something that will make you sick.

yes, it's the peds patient i was specifically referring to. perhaps the young school-age pt might have some problems if invited to a classmate's bday party where everyone is eating pizza and cake. also, i'm taking into consideration that the majority of the pts i will see in the inner-city clinical site i'm heading to next month are from immigrant families from low socioeconomic backgrounds. (sorry, i left out that last part in my original post.)

thanks a lot for sharing, soccerfan12. :)

vintagestudent · Apr 6, 2009

I am somewhere in the middle on this subject. I am an adult who has celiac and I also teach at a school where several of the teenagers have it. It's not a death sentence and not depressing per se, but it is a pain when socializing and for kids and teens who may not understand the full impact of the disease, it's hard! There's gluten hidden in a lot of foods you wouldn't think of like yogurt and puddings, gravies, and soups. It's hard to go out to dinner because you stick out with your special requests and the rest of your party feels sorry for you or maybe even annoyed at all your special needs and maybe guilty for eating foods you can't have in front of you. There's a lot of social issues.
Most of the foods that kids and teens eat are rife with gluten, it's not that easy although it is getting easier as more people are diagnosed and more gluten free foods become available.
As a nurse, (I'm a nursing student) teaching is of course a huge part of you scope of practice. I'd find safe food lists for your pt and talk with them and their parents about substitutions. You can also teach about how celiac effects the digestive tract by destroying the villi in the small intestine and preventing the body from absorbing nutrients. Many people don't get that part, they think it's "just" a digestive problem. I went undiagnosed for my whole life, (I was DX at age 48) and found out I have pernicious anemia, almost no vitamin D, osteoporosis, Because my body "stole" calcium from my bones, and several other major health issues. So celiac is serious, it needs to be addressed and you can happily and healthfully live with it, but it's not that easy and it takes committment.
For a kid I'd also say that the parent has to try and not 'feel bad' that the child can't have certain foods and learn how to make some typical kid foods from scratch celeiac free. It can be done with planning.

THANK YOU for taking time to post. Your comments & suggestions help a lot. I know it's different for everyone dx with celiac disease, but the adjustment can't be easy, especially when the dx is made when a child is old enough to know he/she is "different."

I'm sorry it took so long for you to be dx.

Take care, and best wishes in your nursing endeavors.

vintagestudent · Apr 6, 2009

there is def. a psychological aspect to this issue.....as was explored in the post after this one....and for some there is the grieving of the lost self....etc.....and dont forget to include rye in your list of nonos.....and american grown oats may also be an issue....most cereals from the common brands prob. are made in factories were cross contamination is a potential issue....cosmetics and soaps lotions are all issues....some persons present with constipation not diarhea....good luck

Thank you, Morte! You folks on this site are great! :up:

Take care.

soccerfan12 · Apr 6, 2009

As lonog as the patient would fully understand the consequences and why they can't eat certain foods then they should be fine. But it isn't easy. Gluten,wheat and even barley and malt are in just about everything. Even if something doesn't have wheat in it there could still be malt or barley. That is why you really have to read labels, I usually read them twice. Even with foods I know are safe, I still check because they can change ingredients.

Lunches at school can be hard. When I was first diagnoised I had to explain to my friends that I couldn't eat wheat,barley,malt,etc. They didn't understand. They thought all I couldn't eat was wheat. Lunches were hard at first because the Celiac bread isn't the best. Its never going to be like regular bread. I felt kinda alone, but my mom has it so its good to have someone who knows what I'm going through.

Make sure the patient fully understands. Also if possible, maybe include letting the teacher(s) know as well. The more people that can be educated the better.

There are many substitute foods out there. I have found great crackers that taste just like Ritz, real tasting pretzels, some better bread options. Corn tortillas are good because you can still make simple mexican foods and even use it as a wrap with lunchmeat. I've found cake,cookie, and brownie mixes that taste exactly like "regular mixes". It really makes birthdays and special occassions easy. No one notices the difference. It really tastes "real".

I'd also get the patient used to reading labels. Show them labels with foods that they can't eat and foods that they can. Most labels will bold things like wheat, but you still need to read.

Food is a big part of everyones life. So its hard with Celiac disease, you really need to plan ahead.

I've never had problems with shampoos or lotions but thats what is hard about this disease as everyone is different. I don't think it can actually be absorbed into your digestive tract or anything to make you sick. But I do know some people who will get rashes because they are also allergic to wheat, so they can't come in contact with it.

Cross contamination is an issue. If you are worried about issues then don't eat it. If your at a resturant the manager should be willing to accomidate you. They don't want to get sued. Just ask. Planing ahead is a good idea. I have a list of "safe restuarants" where I know I can eat and be fine. Most resturants have there menus and ingrediants list online so you can plan ahead. I've seen many resturants adopting "gluten free menus" as well.

Oats are controversial as there could be cross contamination issues. I eat oats and have never had a problem but again everyone is different. Oats are hard to digest as it is, without celiac disease. There are some companies that make cross contamination free oats. Oats made only in a dedicated gluten free facility.

Celiac disease is on the rise. A lot of people, myself included, were first diagnoised with IBS until the Celiac disease test finally came back positive (took 3 years to come back positive). Now I have no issues digestivelly but do have absorption problems and low iron/anemia.

morte, LPN, LVN · Apr 6, 2009

As lonog as the patient would fully understand the consequences and why they can't eat certain foods then they should be fine. But it isn't easy. Gluten,wheat and even barley and malt are in just about everything. Even if something doesn't have wheat in it there could still be malt or barley. That is why you really have to read labels, I usually read them twice. Even with foods I know are safe, I still check because they can change ingredients.
Lunches at school can be hard. When I was first diagnoised I had to explain to my friends that I couldn't eat wheat,barley,malt,etc. They didn't understand. They thought all I couldn't eat was wheat. Lunches were hard at first because the Celiac bread isn't the best. Its never going to be like regular bread. I felt kinda alone, but my mom has it so its good to have someone who knows what I'm going through.
Make sure the patient fully understands. Also if possible, maybe include letting the teacher(s) know as well. The more people that can be educated the better.
There are many substitute foods out there. I have found great crackers that taste just like Ritz, real tasting pretzels, some better bread options. Corn tortillas are good because you can still make simple mexican foods and even use it as a wrap with lunchmeat. I've found cake,cookie, and brownie mixes that taste exactly like "regular mixes". It really makes birthdays and special occassions easy. No one notices the difference. It really tastes "real".
I'd also get the patient used to reading labels. Show them labels with foods that they can't eat and foods that they can. Most labels will bold things like wheat, but you still need to read.
Food is a big part of everyones life. So its hard with Celiac disease, you really need to plan ahead.
I've never had problems with shampoos or lotions but thats what is hard about this disease as everyone is different. I don't think it can actually be absorbed into your digestive tract or anything to make you sick. But I do know some people who will get rashes because they are also allergic to wheat, so they can't come in contact with it.
Cross contamination is an issue. If you are worried about issues then don't eat it. If your at a resturant the manager should be willing to accomidate you. They don't want to get sued. Just ask. Planing ahead is a good idea. I have a list of "safe restuarants" where I know I can eat and be fine. Most resturants have there menus and ingrediants list online so you can plan ahead. I've seen many resturants adopting "gluten free menus" as well.
Oats are controversial as there could be cross contamination issues. I eat oats and have never had a problem but again everyone is different. Oats are hard to digest as it is, without celiac disease. There are some companies that make cross contamination free oats. Oats made only in a dedicated gluten free facility.
Celiac disease is on the rise. A lot of people, myself included, were first diagnoised with IBS until the Celiac disease test finally came back positive (took 3 years to come back positive). Now I have no issues digestivelly but do have absorption problems and low iron/anemia.

http://neurotalk.psychcentral.com/thread1872.html

this should be a link to "the gluten file"......lots of info.......and soccor fan.....with a parent with celiac disease, you should never have been dx something else without doing the gene testing......and for the tests to come back positive, the villi have to be in pretty poor shape.....you may well have suffered consequences you are yet to find out about....certainly malabsorbtion didnt help you to grow in a normal fashion.....and dont forget the RYE