blood test for celiac disease

[Anonymous]

Does anyone know off hand at what age I can have John Callan tested for CSD? My pede said he was too young yet (4 months) but she has said allotta things that weren’t so.

[Anonymous]

Addy was tested for Celiac at 1 year. Our Pedi GI said she was still to young for the blood test at that age so he did an endoscopy and took biopsies. She was neg.

[Anonymous]

keep in mind there are lots of people with wheat/gluten intolerance which there is no testing for. my son is intolerant to milk/soy/wheat/gluten.

[Anonymous]

Yeah, I am really concerned that he has CD. I was diagnosed 6 years ago by biopsy and was positive, so I am worried about him. But Elecare is gluten free but I just realized it does contain 6.5 % soy. ALso, is there a significant differece b/t neocate and elecare or it is the same stuff but different brands by different Pharmacuetical co’s? Don’t know much about neocate except that it is even more pricey than elecare. Elecare is produce by Ross. Just curious. Elecare makes him really gasy. He is farting up a storm right now but finally when he passes gas he doesn’t scream anymore – he laughs! Little imp!!!!

[Anonymous]

just curious.. why do you think he has celiac?? what are the symptoms?

[Anonymous]

Well I’m thinking maybe because his villa is grewing, shall I say “a bit bent” that this is way he has such a sensitive digestive tract. I put 3/4 teaspoon of organic, preservative and chemical free rice flakes in his last bottle before bed a few nights ago, hoping he would sleep a bit longer so mommy could rest, and he was very uncomforable the next day or so. Rice is OK for celiacs as you know, but it didn’t go over so well. He is feeding every hour to 1.5 hours four ounces a feeding. And will go maybe 3 hours at night. My husband is away and I’m a working mom, so I thought maybe we could rest a bit more if his tummy was full. No such luck! Do you think maybe putting a couple more scoops of Elecare in his formula would be OK when I make the batches?

[Anonymous]

Our GI told us that the rice cereal might bother Addy more (when we thought she might have CD) because all the cereals typically are manufactured in the same plant and it is very easy with grains to have cross contamination because it gets into the air or the same machines are used for multiple cereals. Don’t know how the rice cereal you used was manufactured, but its a thought.

I would think it would be okay to add a scoop extra but I would talk with the doc first…when making higher caloric formula, I think you have to watch for dehydration…someone else chime in here that might know more about this.

[Anonymous]

Yes – the old cross contamination prob. This iproduct s by Good Earth – not manufactured in a facility that has wheat, barley, etc. So I’m confused again.Like I said, I am a celiac so I knew the ins and outs when i shop but I’ll tell you I’d kill for a cold beer and a slice of pizza sometimes!!!!!!

[Anonymous]

three of my girls have celiac disease. i worry a little about sylvia because she has enamel hypoplasia, which can be caused by celiac. so far, she tests negative. she is 3 1/2 years old and the last time she was tested was in the fall. our ped gi says that the tests don’t start to be accurate until around 3 years old. i am kind of avoiding testing her again, to tell the truth. we already cook all meals gluten free—–i just don’t want to be told right now that another one of my kids has celiac diseas. we are part of a celiac study, and i am waiting for the genetic testing on our family—-then at least i will know who needs to be tested on a regular basis. right now, we know that our 18 yr old son has a celiac gene, but the disease has not been activated in him.

do you have any relatives with celiac? we know of no one else with celiac in either of our family lines—-at least none diagnosed. my dad is allergic to wheat, but has never been tested for celiac.

celiac isn’t going to start until gluten is introduced and something happens to activate the disease—-so chances are, even if your son ends up with celiac eventually, it isn’t a problem for him now.

i just saw my obgyn today. i knew his brother’s family had gluten problems, so i asked him a little more about it today. he said they are 10 for 10. ten kids, and all of them have celiac disease—so does their mother.

kevieb2007-6-5 15:59:48

[Anonymous]

Christine,

I was just reading your post here and I just asked our allergist about this idea that the blood test for celiac isn’t accurate until age three and he said he’d never heard of that and that it really doesn’t work that way and then there were also two residents in the room with us and they each were like “antibodies are antibodies” and “we’ve never heard anything of the sort.” I’ve noticed I feel much better off gluten but have never had pronounced problems of any kind and was only off gluten because of nursing Lucas. When I went back to eating regularly I initially got some hives and then seemed to be okay but don’t feel as good– I don’t know how to explain it. Anyways, I am curious about this because Lucas still isn’t eating gluten and I’m nervous to test for it and ruin the sleep we’re getting. Any further ideas?

[Anonymous]

i’m not sure what the allergist meant when he said that it really doesn’t work that way? some kids just don’t start to produce Ttg antibodies until they get a little bit older.

i have seen plenty of people say they feel better when they don’t eat gluten, even if they test negative for celiac disease. you can be gluten sensitive without having celiac disease. i’m not sure what the whole implications of that are—-i would imagine that those people would get similar symptoms, they just wouldn’t get the intestinal damage that marks celiac disease—-but i don’t know this for sure. i think that some people can have a secondary gluten sensitivity that is caused by something else. once the “something else” is figured out and treated, the gluten problem goes away sometimes.

have either you or lucas been tested for celiac? by your post, i am assuming that you mean that you don’t want to do a gluten challenge on lucas right now in order to do actual celiac testing?

i would say that your hives sound more like an allergic reaction rather than celiac—-but tianna was getting hives before she was diagnosed with celiac and she is NOT allergic to wheat—even though she is a celiac. i don’t think she is getting hives now that she is gluten free, so i definitely think that celiac can cause hives.

did lucas test allergic to gluten or did you just discover he had a problem with it by trial-and-error? if it was an allergy, did they think he might outgrow it? did they suggest doing a gluten challenge later and testing for celiac? sorry for all the questions!!

how is lucas doing with his hiatal hernia?

[Anonymous]

Hi christine,

Thanks for all the info and inquiry. No he didn’t test allergic to gluten, he tested negative on an allergy for wheat (and all the other major allergens) and when they did the celiac blood test he tested negative for celiac specifically. However, I noticed a HUGE difference in him after removing celiac from his diet. I guess I’m second guessing our allergist who seemed to really dismiss the idea that the test would not be accurate for Lucas at age 18 months….I especially wonder about what he knows when I hear differently from you and half your family has been diagnosed and you’re somewhat of an expert on the subject.

I am terrified to do a celiac challenge, but the allergist cleared us for any challenge that i’m ready to do. We’re waiting on his last two teeth to come in– teething has been such a nightmare for us and I was concerned I wouldn’t truly KNOW the accurate reaction if I suspected teething was in the mix as well. I’m first going to trial dairy since we slipped him a few bites of ice cream in July and he didn’t seem to react. I’m actually most worried about the gluten because of his dramatic improvement with removing it. I guess you’re right, he could be intolerant of gluten or sensitive and we might always have to watch out for him. Do you know of any methods for challenging gluten…have you had to do it with your kids or did you just go off the gluten and never try back again?

the best method I read about was from a link on this site, where you give a small amount of the food, then wait several hours and double the amount and give that (if there’s been no reaction). Then you wait through the next day and watch and note changes, etc. Then on day three you do the same thing again, only with even more of the food, like maybe three times the original amount, then wait several hours and offer four times the original amount. Day four is an observation day as well. Does this sound like something you’ve heard of? I think the premise was that if there’s been no negative reaction in four days then the child is okay to eat that particular food. But the focus of that specific type of trial was dairy and other allergens I think, not necessarily gluten. I guess I would try to give a wheat bread that doesn’t contain other grains initially. Have you had to deal with this? any suggestions or does this sound reasonable?

Our allergist is hopeful that he’ll outgrow all his intolerances and actually said unless something goes wrong he doesn’t need to see us again. Things have been pretty steady with us since removing gluten and sticking very strictly to dietary restrictions. I’m just scared to rock the boat!

[Anonymous]

we did not do any gluten challenges with our kids because they tested positive with a tissue transglutaminse (Ttg) test. we did follow up bloodwork and all 3 of them had their blood levels drop after being gluten free. Ttg is pretty specific for celiac. it is the newest test that they do for celiac. sylvia has tested negative so far, but i worry about her a little because of her enamel problems. she also has had a rash on her bum for ages. i thought it was the diapers, but now that she is potty trained she is still dry and rashy looking off and on. her ribs really stand out, too. i guess she is still pretty skinny. one of the kids also commented to me the other day that sylvia’s bm’s are always so big and sometimes pale. hopefully this is all nothing.

as far as reintroducing foods, i have heard of doing it in a similar way that you have described, but since you are not quite sure what you are dealing with, i think i’d keep track of any and all reactions he may have to new foods over a period of time. people seem to react so differently to gluten when they have a problem with it. it is no wonder that celiac disease and non-celiac gluten intolerances are so hard to diagnose. some people go strictly by dietary trials because they see such improvement regardless of what test results they get.

[Anonymous]

Thanks for the info. I just remembered that when he had his testing done, he had already been off of gluten for quite a while. I can look for the testing dates, but I think he’d been off gluten for over a month (at least) at the time of the blood test. Would this affect the results according to what you know? At the time I was scared that our allergist would have my re-introduce gluten prior to testing and he said that wasn’t necessary. Just curious if this is something you’ve heard about.

Thanks again!

[Anonymous]

being off of gluten before testing can DEFINITELY mess up the test results. ideally, when someone with celiac disease has been gluten free long enough, their blood tests will show negative for celiac disease, even though they will always have celiac disease. molly is so careful about how she eats that she is able to keep her blood levels in the normal range. the twins have been know to cheat, and it shows in their blood tests when they do. your allergist may be good with allergies, but he doesn’t seem to know alot about celiac. there is so much new info being learned about it, that i think some of the newly diagnosed celiacs might know more about it than some “veteran” celiacs that haven’t kept up-to-date with the new info.

[Author]

Posts