well son's biopsy came back celiacs...
Options
lin7604
Posts: 3,019 Member
well we finally got his results almost a month later. He is in fact does have celiacs. Now i guess the next step is seeing the nutritionist and see what happens from there. He is going to be 6 in oct and we are talking alot about it at home as he eats 90% wheat items... it will be a hard transition for him. The dr said that when they are young like him, they can outgrow it? or that his maybe very mild. she said some take it out 100% and some only remove certain items and have it still but minimally? she said as so many people don't get diagnosed till they adults, which i guess is good for us as we never new he would of had this as he really doesn't have symptoms....
0
Replies
-
What were his symptoms if you wouldn't mind sharing. My mom is 71 & has all the "symptoms" she was even told by her thyroid dr her blood tests showed she has it. But she won't even try to cut out gluten ! She has diareaha & has vomited once a day for the lat 2 wks, trouble breathing, nasal congestion, many others. Sooo frustrating !0
-
oh my, that sounds terrible... she needs to cut it out to make her feel better... my son had one 2 week phase of a tummy ache daily with a headache. that was it for 8 months. then again in Aug he has the same for 2 weeks on and off. I took him to the dr b/c of his headaches. they did blood work and it showed it then. The dr wanted to make sure as you can have a false positive as they said, so he had a biopsy. It showed on that it was confirmed but they said it was mild? what ever that means?0
-
oh my, that sounds terrible... she needs to cut it out to make her feel better... my son had one 2 week phase of a tummy ache daily with a headache. that was it for 8 months. then again in Aug he has the same for 2 weeks on and off. I took him to the dr b/c of his headaches. they did blood work and it showed it then. The dr wanted to make sure as you can have a false positive as they said, so he had a biopsy. It showed on that it was confirmed but they said it was mild? what ever that means?
It may be mild now, but every time he has gluten, it will do him more damage. If he were gluten intolerant you might be able to cut out some of the things he eats but not all, but with Celiacs you really do need to cut out everything. 100%. And he may react worse and worse if he does eat gluten after being off it for a while. You really need to watch everything he eats, what you cook with, what is in the sauces etc not just for his health now, but for his health in the future.
Definitly meet with a nutritionist, and do some research yourself too. Celiac can cause issues with other parts of the body, not just his stomach. Headaches, joint aches, mal-absortion of nutrients.0 -
thx, i have been reading up on it but WOW my head is spinning. i just thought it was weird that the dr said he can grow out of it? how would you know if you are not eating it? man he is going to miss out on so much like hot lunches days at school and birthday parties, etc he's going to feel like a outcast not being able to eat the same as everyone else. This is a hard age for things like that, they don't quite understand.0
-
Your doctor is behind the times. They used to think that only children got celiac disease, not adults, and that children outgrew it. This was because their symptoms would change. Not because they actually were cured. They would stop throwing up and losing weight on eating wheat, so the doctors thought they were cured.0
-
but if you have removed it from your diet and don't eat it.. how will you ever know you "could" eat it again at one point? that is what i was confused about when she mentioned it... but what ever.... we will have a appt soon with a nutritionist and see what they tell us.0
-
I work in the pediatric gastroenterology clinic at a hospital as a booking clerk and I can tell you that it is definitely not uncommon for children to be diagnosed with celiac. We have at least 2 or 3 diagnosed every week. I dont think he will ever outgrow it but his symptoms may change over time and he could be just become gluten sensitive, but for most its a complete change in the way they eat for life. It is definitely not an easy transition at first but with the help of the nutritionist it will be a whole lot easier.0
-
so how will i know if he becomes just gluten sensitive later on? how can you tell the difference from celiacs to just gluten sensitive? since he really has no symptoms now i don't know if i would know the difference...0
-
thx, i have been reading up on it but WOW my head is spinning. i just thought it was weird that the dr said he can grow out of it? how would you know if you are not eating it? man he is going to miss out on so much like hot lunches days at school and birthday parties, etc he's going to feel like a outcast not being able to eat the same as everyone else. This is a hard age for things like that, they don't quite understand.
Make sure you don't make him feel like this is the end of his world. Its going to be hard for sure, but he won't be an outcast. There is no reason he needs to feel that way. If you are going to a birthday party, take a gluten free cupcake for him, and make sure to find out what they are serving for food so that you can send your own if you need too. Will it be exactly the same as the others? No. But he won't be missing out totally. Sometimes he will have to miss out, but he will learn in time why that is.
You should make sure to contact his school and make sure the teacher/lunchroom ladies know that he has celiac so no one gives him anything, and any other adults who are watching him (playdates etc) should also be informed.
And Halloween will be hard, make sure to have a good stash of gluten free candy on hand to trade him for all the gluten filled goodies. You don't want to just take it away. We do this every year because we have one child with dairy allergies, and 2 that can't have peanuts. Nothing like telling a 3 year old he can't eat a chocolate bar.
And as to your original question about knowing if he ourgrew it when hes not eating it, you'll know pretty quickly after he does eat something. Odds are he will have a reaction of some type, wether it be headache, stomache ache, or something more severe. I really wouldn't suggest "testing" him like that though until he is much much older.0 -
Do you have a Pinterest account? There are tons and tons of gluten free recipes on there, and lots for fun things like donuts, cookies, waffles, graham cracker etc.0
-
thx. i do and i have copied a few recipes. I really need to find a good break recipe for a bread machine. if i can find that, then the world won't end for him,lol... he eats tons of bread, loves his pancakes and pizza... so those recipes are a must.
i guess i still have to do more research to find out what candy is gluten free, who knew even chocolate... the only one i know of is m&m's i think are good...
i also know like you said it's not the end of the world, i get that.. he may not yet. I think even if i bring him his own cupcake, etc for a b-day party , it's still not the same to a 5 year old, he is still " different".... as he can't eat the same as his friends. i know when he gets older he will understand that but it makes it hard when kids are so mean now a days....
i don't think if we go full blown gluten free i will do it all cold turkey....and have NO gluten just like that. I think i will gradually wean it our and replace his favourites with a new recipe and get him used to the new changes slowly. others have told us to have the "household" go gluten free as it makes it just that much easier but i don't know if we will. It's very expensive for one to all be gluten free plus i keep reading it's not the healthiest. I hear so many have made the comment when others go GF for healthy/ weight loss0 -
You're setting him up to be hurt by your attitude. You gotta be strong, momma. You have to treat this just as it is, as a medical necessity, not a social or emotional sentence. It's about food, not friends. He can still do all of the normal things that a 5 year old can do. You just need to supplement part of his diet. We have always had the policy in our house that if DS goes to some event or friend's house or something and they had, say, brownies, and he really wanted some, then I will make him brownies when he gets home. Then he knows that even if he unexpected finds himself in a situation where there is a treat he can't have, I will take care of it.
And there will be situations where you were not expecting there to be food or gluten filled treats that there are, and he has to sit it out. That's just the way it is. He'll learn to be strong and say "no, that would make me sick", and not eat the treats he finds himself confronted with. Will it be hard? Sure. It was a couple of years before it finally sank into my son's brain that if he "snuck" crackers or pretzels or something while he was at someone else's house, he would end up throwing up half the night, and it wasn't worth it. But you have to be firm and strong and not baby him over it. Acknowledge the loss, but don't dwell on the foods he can't have, and don't "poor baby" him.
There is plenty of gluten free candy and chocolate around. That won't be hard to find. And there are so many fabulous gf recipes available. I gained quite a bit of weight when we went gf after halloween and I spent the next two months making Christmas treats and trying out different kinds of breads!
Our household went GF. Cold turkey. My son has special needs and there was no way that he would have the impulse control to avoid gluten if it was in the house. He would sneak into the basement with a can opener to eat cream of mushroom soup cold out of the can to get his "fix". That was no way to keep him out of food that he couldn't have, so everything in the house had to be something that he could eat. We are vegetarian and dairy-free as well. The one danger of making the household gluten free is discovering that others in the family are gluten sensitive as well! Hubby and I had no idea that we were gluten intolerant (DS is adopted, so he didn't get his gluten intolerant genes from us!) So we would eat GF at home, but if we were out at a conference or something, we would have a cookie or sandwich luncheon or whatever. And then we would be react, because we had gotten the gluten out of our systems at home. One you have the gluten out of your system, your reactions to it become more obvious. Your son got his genes for celiac disease from one of you. Have you had the rest of the family tested?
It is not expensive to eat foods that are naturally gluten free. Potatoes, rice, fruits, veggies, nuts, plain meats and dairy, etc. are all gluten free. Yes, if you base your diets on bread, cereal, and pasta, then GF replacements are going to be expensive, but if you expand your repertoire to include all kinds of great naturally gf foods and homemade yummies, it will not be expensive.0 -
i get what you are saying but for a child that has no symptoms he doesn't get why he can't eat it. it was by fluke with blood work we found this out not because he was sick all the time. That's the point i am trying to make, he doesn't get why he can't have it, it's not like i can say " remember how sick you got after you ate ***"... I am not setting him up to be hurt at all, it's the reality of children. If they can't have what their friends has, they get hurt feeling, etc not b/c i made it that way. If he's at a party and i can make him his own cake, etc fine but what about when we are out and about and need to stop and eat? i can't just have something whipped up for him that we are all having to make him feel better. not at this age. maybe in a few years, yes but not right now.
i hear going gf isn't a great choice if you don't need to? I hear you miss out on essential vitamins/ minerals, etc and people that go GF b/c they think they will lose weight and stuff are silly. I doubt our whole house hold can go GF just b/c of the cost. There may be certain items we will all eat together and stuff but for the most part i will have his sandwich made with his bread and ours from regular. I know it would be easier for the whole house to go GF but with the expense and lack of vitamins i don't think it's in our cards....
i will be getting blood work done in jan so i will be asking them to add that on the list, just to see. I really believe it's from my in laws side of the family. They all have digestive issues and they just assume it's their lactose intolerance but i think it's this.....
I also think with the fact you said about the natural items arn't expensive, you are right about that.. unfortunately my son has been a wheat addict since i can remember.. everything has been sandwiches, pancakes, pasta and cereal, etc so it's a major change from him getting him off any of those as much as he does eat it. I told him we can still eat breaded chicken but i have to use special breading for that, etc i will bread my own fish at home for him too so he will still eat fish as that's the only way he will eat it. but he won't eat potatoes at all unless it's fries, but he will eat rice. veggies i am working on him too for the last 3 years. he used to eat all of them now only honey carrots or occasionally raw baby carrots and corn. tomatoes only in pasta sauce nothing else, not even a pickle... he tried sugar snap pease but didn't care for them and celery. can't get him to take a bit of anything else
as for nuts, only almonds and chocolate covered, grrr....barely will he even have peanut butter.
It's just a challenge in every way right now. i am learning, he is learning and he is having his world turn up side down right now. if we went cold turkey i think it would be too stressful on all of us. So a gradual exit of items will be easier for him to accept out of his diet... eg) once it's finished in the cupboard, it's not bought again, etc....0 -
Hang in there. It can be tough. I understand that for sure.
A lot of kids who are "addicted" to wheat and won't eat eat anything else really change after gluten is removed from the diet. So just because he won't eat a lot of fruits and veggies now, you may find that changes once he has been off gluten.
My son's symptoms were not obviously being caused by gluten. He had a lot of digestive problems (I understand yours doesn't) but nothing that we could had pointed at gluten and said "this is why". But after removing gluten from his diet, it was obvious when he would have them again because his symptoms were a lot stronger. The body's immune system wasn't so depressed all the time so it could actually react. You may f ind that your son's symptoms change once he has been off it for a while. And yes, that makes it a lot easier to convince them to leave it alone. In the meantime, there are a number of books around for kids that explain celiac disease and why they need to stay away from gluten. Even if he has no obvious symptoms, you know that he already has damage to his gut because of the biopsy, and you can explain to him that even though he gets headaches instead of stomach aches, the gluten is doing damage to his insides that the doctor could see when he tested.
As far as people not getting the proper nutrition when they go gluten-free, you need to look at properly researched studies and see what they say. Because just "people say" isn't enough. Yes, celiacs are often low in a number of vitamins and minerals, because with the damage to their gut, they could not absorb them properly, and it can take the body a long time to recover. People who go gluten free may not have as much gut bacteria because they tend to replace whole grains with starchy gf substitutes. If you are eating plenty of whole foods - fibre/prebiotics, then that should not be a problem. But a gluten-free diet itself is not inherently deficient. Like any other diet, if you rely on heavily processed foods instead of a variety of whole foods, you are not going to be healthy. If you have any specific studies that show deficiencies, feel free to post them/contact me and we can discuss how to get those particular vitamins/minerals or if there is a particular problem with your diet. But doctors, nutritionists, and newspapers tend to just cover their butts by saying things like "you have to be careful" or "you have to plan carefully to get all your nutrients", etc. The same thing as they've been saying to vegetarians/vegans for years - "oh, you have to plan carefully or you won't get enough protein/calcium/iron/etc." when really, it is not difficult.
Out of the things that you have said that he likes, I think that pasta is the easiest to replace with gf, so you might want to try that first. There are some good gf breads around right now, but they are so expensive that you probably don't want to replace all of the bread he's eating now with gf bread, you'll want to cut back the amounts. My hubby and son would go through 6 loaves in a week before we were gf. Now I only buy one loaf a week. There are other options.
But like I say, hang in there. I want to encourage you, not discourage you. You can do this, even though it may be hard. And it won't be hard forever. You'll quickly establish good recipes, things that you can buy when you're out, snacks that are quick to repair, etc. Most people only use 5-10 recipes regularly. You'll quickly find your new 10.0 -
thx, i have been reading up on it but WOW my head is spinning. i just thought it was weird that the dr said he can grow out of it? how would you know if you are not eating it? man he is going to miss out on so much like hot lunches days at school and birthday parties, etc he's going to feel like a outcast not being able to eat the same as everyone else. This is a hard age for things like that, they don't quite understand.
My first suggestion to anyone dealing with a new Celiac is "Go buy 'Easy Gluten Free Baking'" it has amazing bread, cake, twinky recipes. It is a amazing. Things like parties can be really easy to deal with if you send him with his own treats. Kids often do understand allergies, especially food allergies, especially since so many kids have/are aware of peanut allergies, they probably won't ostracize him but they may ask why he is eating differently, all he needs to say is that he has to or he gets sick. Packed lunches are going to be better for him nutritionally speaking anyway. There are a lot of really great and easy GF alternatives for people on the market today, I would suggest that you check out gluten free food blogs and there's a bood, Cook for Isaiah (http://silvanaskitchen.com/book-2/) that will probably be benefitial. I suggest going totally gluten free for a full year, he won't be able to be tested for gluten again, he'll have to actually eat gluten, otherwise he will get a false negative. I know some people go gluten free for a few years and can then have gluten on occasion or in minimal amounts. Best of luck! It really isn't the end of world, I am a much happier person being gluten free, my ADHD is gone, my depression has improved, my grandmother commented that my personality has totally changed, I'm much more outgoing now because I don't feel physically miserable. Chose to see the positive of the situation, it will help your son have a better and brighter outlook on it. check out my blog, I have a few recipes posted for GF stuff, and feel free to message me for recipes or if you have questions.
REL going wheat free if you aren't gluten intolerant: I suggest people don't go gluten free if they don't have to, there is no reason to, however, my family will be gluten free because I am so sensitive to it, it is a genetic mutation so the rest of the family might want to get tested for celiacs as well. I know many parents go gluten free with their child and feel better for it, I also know many do it so the child doesn't feel "different" at home as well as at school/in public. It is a genetic issue, so you really should go gluten free for a month as he transitions, a month won't cause any issues. As for lacking minerals/vitamins, I have never seen any proof of that, wouldn't all us Celiac folk have issues if it were true? Take a multivitamin if you are worried, but I think it's a scare tactic, there is nothing, that I am aware of, that people get specifically from wheat that we don't get from other foods.0 -
No, no no! He's had a positive blood test and positive biopsy! Even if he doesn't feel any symptoms, gluten is eating holes in his guts. He can't have just a little bit. He can't have any!I suggest going totally gluten free for a full year, he won't be able to be tested for gluten again, he'll have to actually eat gluten, otherwise he will get a false negative. I know some people go gluten free for a few years and can then have gluten on occasion or in minimal amounts.0
-
i guess i hear people more so saying b/c it's not as healthy in some ways with baking, etc..they are higher in cals, sugars, etc i have been told.
I do agree that pasta will probably be the easiest transition, i hear there is pretty good rice pasta to use instead. the bread thing will be hard or learning to make good muffins and pancakes. once we have those he will be happier.... i just don't know what i will send for lunch at school in the beginning if the bread, etc is cut out. soup i guess but not for 5 days in a row,lol... i am so not creative either, i get stuck in a rut with meal planning, so i am stumped right now even though it may seem simple for you guys.
" quote" I know some people go gluten free for a few years and can then have gluten on occasion or in minimal amounts......
i do too, i have one neighbour that said she will not get a separate toasted or condiments at home to use as she wants to feel like she can still live and be a bit free......
she is one that it's not that serious and she can have cross contamination and not get sick at all. I hope that is the case for my son, so if we were to go out and eat, i would hope it will be ok and him not get sick after..... it sure will be challenging going to mexico this year....0 -
thx. i do and i have copied a few recipes. I really need to find a good break recipe for a bread machine. if i can find that, then the world won't end for him,lol... he eats tons of bread, loves his pancakes and pizza... so those recipes are a must.
i guess i still have to do more research to find out what candy is gluten free, who knew even chocolate... the only one i know of is m&m's i think are good...
i also know like you said it's not the end of the world, i get that.. he may not yet. I think even if i bring him his own cupcake, etc for a b-day party , it's still not the same to a 5 year old, he is still " different".... as he can't eat the same as his friends. i know when he gets older he will understand that but it makes it hard when kids are so mean now a days....
i don't think if we go full blown gluten free i will do it all cold turkey....and have NO gluten just like that. I think i will gradually wean it our and replace his favourites with a new recipe and get him used to the new changes slowly. others have told us to have the "household" go gluten free as it makes it just that much easier but i don't know if we will. It's very expensive for one to all be gluten free plus i keep reading it's not the healthiest. I hear so many have made the comment when others go GF for healthy/ weight loss
Its hard, the "different" thing, but it wears off and becomes second nature. I've got Celiac and worked with young kids who had it and others who had deathly peanut allergy, deathly milk allergy, etc. It becomes a non-issue after a while, just what he happens to be doing.
I highly recommend Tinkyada pasta. Schar and Udi's make pretty good bread products. My suggestion for the b-day party situation -- make him an AMAZING LOOKING cupcake with like 5729084320984032 times the frosting. Maybe with a molten chocolate center?! The other kids will be jealous.
Mexico might not be so bad. Actually, for me, mexican food is the safest restaurant bet! Like, eat a thousand plates of nachos. I have never gotten glutened from them (I ask for no beans just in case the recipe has something wheaty). Soft corn tortillas will be amazing there as they are likely to be fresh.
But... I would really suggest not trying to "Test" too much what his reactivity level is. I was careless for a few years, and ate stuff that was labelled GF but had been made in a facility that also processed wheat. I had my antibodies test positive -- who knows what damage I did in that time, thinking I was okay. Sometimes you can have antibodies damaging your body, but no overt symptoms. You don't want that for your boy, hard as it is. And he will likely do his own "tests", intentionally or no.0 -
ya he probably will do enough of his own tests, sneaking foods in when not around me....a friend of mine went to mexico last year and she has celiacs and the resort gave her a card to present that showed her allergy and has special stuff made for her. she said she had no issues at all but she's not severe with reactions... so like you said, who knows if she really did have a reaction and do damage? I find that when in mexico for us as my son is so very picky he normally eats chicken nuggets, fries, pancakes, buns and fruit pretty much all week. ( occasionally pasta with butter and garlic) it's the same old day in and day out for the 2 weeks. i never understood how he did it and not get sick of it... but he didn't. same breakfast, lunch and dinner daily. so now with no chicken nuggets, buns or fries for him, what will he eat? that will be interesting... he won't eat nachos and i never see corn tortillas just available for one to make something with....maybe if you purchase your own from the supermarket but not sitting out at the buffet unless it was part of the theme dinner...0
-
I'm one of those children who would grow out of it.
I was diagnosed when I was under 2 - there was a family history of it. When I was seven I went to hospital for a week and was gluten challenged. At this point the doctors decided that I had grown out of it.
Eleven years after I was being treated for arthritis in my hips and had severe skin problems among other symptoms. At sixteen I was facing the prospect of ending up in a wheel chair - finally my GP realised that it was the coeliacs as I had never grown out of it but it had gone silent for so many years.
twenty years later ( and very strict gluten free diet) I still have the after affects in my joints although they no longer seize up but for the rest of my life they will ache especially in cold weather ect due to the fact the doctors used to think I would grow out of it. Because of those 11 years I'm also at more risk of bowel cancer and we will never know if it had an influence on the fact that over the years my body has become intolerant to other foods.0
