Search Results for 'celiac'

[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]

Heidi,

I’m so sorry to hear about what you’ve been through and so impressed at your efforts to deal with the MFPI. My son is nearly three, tested negative for allergies to all the major food allergens, and the allergist said this means that his reactions are all intolerances. He also tested negative with the blood test for celiac, but dramatically improved with the removal of gluten from his diet. He does quite well on the restricted diet (no dairy/soy/gluten or beef and no highly acidic things) and we are hopeful that he will be outgrowing this soon. I also feel like I could deal with this long term if I had to, it’s just so much easier if you don’t! I want to thank you for all this information because it’s really a treasure to have this tohether in one place. I will definitely be reading through a lot of this very soon.

Also, Lucas had the rings under and around his eyes and I think he and I both have that line or wrinkle under the bottom lid that you mentioned….I didn’t know anything about that. He was anemic around age one, and I had him on vegetarian diet and i was very restricted with my diet but still eating gluten at the time (we didn’t realize that part of hte puzzle then) and then introduced turkey and chicken and eventually pork after the anemia results. He hasn’t been anemic since. I do worry a b it about his calcium intake, although his rice milk is fortified.

THANK YOU again for all this wonderful information. There are so few of us out there that it’s difficult to find this info or find anyone to talk to about this kind of thing. Do you live on the west coast?

[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]

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]

Claire,

sorry iam late to this. Iam sorry i have no experience with the eye rolling. Bu Kendra will be having an endoscopy done on the 8th and i can tell you iam very excited about this as i am hoping this will give us answers, specially to rule out or to comfirm EE, which the Gi suspects. Blood work could be helpful to test for IgE mediated allergies, but is not very accurate to test for celiac or delayed allergies (non-IgE realted) on little ones. We had all blood work for kendra and she stills has allergies problems. Celiac will not be able to be diagnosed with a biopsy unless the patient is consuming wheat. I asked our GI about this and that’s what he told us. Skin allergys testing is not very reliable either, but it sometimes can give you an idea of what’s might be going on. We had the prick skin test done and it was negative. the allergist said this test only shows IgE mediated allegies. We will be having the patch skin test done and he said that can give more accurate for delayed allergies for children 1 and above. infants (under one) the best thing is the breast mlik on the elimination diet and solids to be introduced as late as 1 year old. This is easy to write of course, i just wish it was easy to do.

I hope things go well wit her endoscopy. I htink this is might be a good thing for her as it can give answers.

[Anonymous]

claire, i was able to stay in during tianna’s scope and i thought it was so neat to watch the whole thing. the doctor had me stand right next to him and hold onto her hands so that she would not put them to her mouth during the procedure—she did not remember a thing a bout the scope later.

the blood tests aren’t especially accurate at this age, but if your doc wants to do them, i would go ahead and do them—-if things are negative, you will know that allergies are still possible, but if you get a positive at her age, you will have no doubt. our doc ran the blood tests on sylvia at 6 months old.

if they are checking for celiac for any reason, make sure that they take enough biopsies and run the right blood tests. (just thought i’d mention that since lori mentioned celiac)

[Anonymous]

Claire,

Not to confuse matters further, but we were told that the blood testing for allergies is quite unreliable in babies that young. There were two different kinds they told us about, and we were told that one kind usually gives false positives, and the other false negatives. With that information, we didn’t do either of them, so I don’t know any more details. We did have a complete metabolic workup- blood and urine- and they did look for some allergy markers in the blood, but again we were told that they can’t be ruled out even if they’re negative. We were told the same thing by the GI who did the biopsy. Also, intolerances won’t show up in the testing, and many moms of babies with intolerances do choose to try either the elimination diet (if BF) or elemental formula (if bottle feeding). But as I said in my other reply, the scope can show eos cells looking for EE, and also can indicate celiac. We found it useful to assure us that any previously existing damage was now healed on her current dose of prevacid. We’ll definitely say a prayer for your little on next week. HUGS.

[Anonymous]

i skimmed through the thread. the mom of the little boy does sound like she is pretty inexperienced and i am floored that she would use mood altering substances with a baby around—–but it sounds like the little guy might have a health problem—-not necessarily that his mother doesn’t feed him.

i say this because MY kids have been the ones over the years that were the smallest and the thinnest——and several of them have celiac disease. we don’t know how long they were sick before they were diagnosed. molly was so thin that my sister once told me that she looked like an ethiopian child—you know, the emaciated ones. her wrists were so thin i used to tell kevin that she looked like she would break.

if the little boy was not being fed breakfast, he would understandably be pretty hungry when he came in the morning—–but once he was fed there should be no reason for an increased appetite all during the day. it makes me wonder if he could have a malabsorption problem.

in our state, if a person is on WIC, they have to go to parenting classes and they have to bring their children in on a fairly regular basis to be weighed.

[Anonymous]

Like Laura said, many babies roll their eyes while feeding- we called it “milk drunk”. So it can be hard to tell the difference. Usually their super relaxed while feeding, and I always thought that they were kind of falling asleep. Hailey had eye rolling that was Sandifer’s.

The scope really isn’t as bad as you (and all of us going through it) fear. It was probably the easiest test she had done. It can tell you if there are allergies, but a clear scope doesn’t mean that there are no allergies or intolerances. I believe the biopsies they take look for EE (allergic esophagitis) or celiac. A clear scope will tell you at least that the zegerid is doing the job and the dose is fine, which gave me a lot of peace of mind. Even though Hailey’s scope was clear when we had it done (after being on a good dose of prevacid for several months) she still had bad Sandifer’s. I don’t know why. Maybe she still had acid, but not bad enough to damage her esophagus, just to be uncomfortable.

Good luck with the test. Keep us posted.

[Anonymous]

Just a word of caution from a dietitician point of view, if at all possible hold off on oatmeal/barley cereal until she is 6months old. These contain gluten which rice cereal does not and introducing these before 6months old can increase her risk for celiac dz in the future. We have just started veggies so I know how hard it is to just be giving veggies/fruits but if it prevents celiac dz which isn’t easy to manage (many foods have gluten in them), then we are waiting until 6months possibly 7 to introduce any cereal.

[Anonymous]

HI Maria,

Here are my thoughts. I am at work and can’t read everyone’s response so excuse me if I repeat something. If he does have MSPI then he most likely can’t tolerate rice cereal as the protein in it mimics the protein in milk. Also You should avoid oatmeal/barely cereals until 6months as the introduction of gluten before 6months of age can increase the risk for celiac dz in the future (let me add that I am a dietitian). We just started solids last night (Cooper just turned 5months old) we are starting with veggies and leaving out all cereals for now… which isn’t a big deal since his formula is fortified with iron. Most babies do outgrow the MSPI but not usually until 9-12months old, I think I saw somewhere that 3% or something low like that will keep it for life… but don’t quote me on that. I hope this helps. Good luck.

[Anonymous]

No, the biopsies don’t show what she’s allergic to. It can show EE or celiac, or some other forms of allergies, I believe, but not specific foods.

[Anonymous]

rony!!!! you have appeared out of no where!!!! it was really cool to scroll down and see your name. i could hardly believe it.

as for the heiner family…….none of my children are having reflux problems anymore. the girls’ celiac diet seems to have finally eliminated their reflux. my reflux, however, is horrible. the girls ped gi told me that he thinks i should take a “road trip” if i am going to have a fundo done—–don’t quite trust the local surgeons to do this one. i also may be needing to have carpal tunnel surgery done on both wrists—-tests are borderline, but my hands keep cramping and my fingers go numb at night sometimes. (i am such a whiner!!)

BUT…..my fibro is doing a lot better right now!!!!

sylvia will not be going to college in diapers—-she has finally potty trained these last 2 weeks. she is a ball of fire and still pretty skinny, but she is healthy. she will go to pre-school this fall. (thank you, grandma!)

sammie thinks that life is a social event and hardly knows what to do with herself if she doesn’t have a friend to play with—-family doesn’t count. she goes to 2nd grade this fall.

elliot manages to be all boy, even though he is surrounded by so many girls. he sleeps in a closet—good thing he is 9 yrs old because he thinks it is neat. he will be in 4th grade.

molly is a very crafty child, she has recently started water color painting. she loves to model with clay. she has made some beautiful dragons. she made me a nativity with mary, joseph, baby jesus in a manger, 3 wisemen, a shepherd, a sheep and a star—-all of this was in half of a walnut shell—–and there were details like black pupils in the eyes and a band of different color around mary’s robe—–don’t ask me how she does work this detailed and small…….she is going into 7th grade.

tianna just started driver’s ed this morning. she is maintaining her weight, although she continues to have small relapses with her eating disorder every so often. she is a very calming influence in our house—-i am so greatful that her depression is under control.

kassie has had her license for quite some time and has a part-time job at a fast-food joint. she and tianna will both be playing soccer in the fall for the high-school. they will be juniors. they are pretty girls with long, dark, wavy air and big eyes….but VERY skinny.

ian is built like a brick house. he works out all the time. he has a job this summer working at the fair grounds which keeps him really busy. he will be a senior this year. he has hair like nobody’s business—when he was little, i used to say it was the only thing on him that grew. he has a girlfriend—-she is delightful, but we’re not particularly happy with him dating steady while he is still in school.

dasiy is enjoying her mission and has just been transfered back to the visitor’s center in oakland, california. she is such an amazing person—-i can’t believe i gave birth to her. she will be 22 in august.

leif is adored by all women, but he struggles immensly with self-esteem and depression. he is brilliant, but has been diagnosed with ADD and bipolar ll. he is adorable, and hopefully we will get him to like himself as much as everybody else likes him. he is 24.

kraig has an adorable little boy.

javonni also has a little boy, but we have only seen him once.

we are putting our house on the market. we are hoping to buy my mother’s house. we need more space!!!! i have mixed feelings about this. we have lived in this house for 18 years and have a huge yard, but only 4 bedrooms and a small family room. my mother’s house has 6 bedrooms and an extremely large family room. her yard is smaller, but still a pretty decent size.

i tried to condense this, but it still turned out to be a book, sorry.

i would love to post some pics—–if someone could help me figure out how to do it!!!

kevieb2007-07-09 17:09:30

[Anonymous]

When Carson had his biopsies done, I was able to be with him until minutes before he was asleep. They let me walk to the door and then took him and I could watch through the window. The anesthesiologist was RIGHT THERE and they held up a spinning toy while letting him breath the gas. It went so well. They debated as to putting an IV in (in case of trouble due to his reflux) but I assured them he had nothing to eat for the X hours they said, so they didn’t put an IV in. IF they would have had to put an IV in, they would have done it AFTER he was sleeping. The worse time was coming out of the anesthesia. He cried and cried – they gave him Tylenol and he slept for another hour and woke up happy.

IF YOU DECIDE TO DO THIS, get all you can get done at once. Have them do a celiac spru test also (biopsy from the intestine) and, we had tubes put it. Carson hadn’t had many ear infections, but fluid, so we had PE tubes put in. He had several biopsies done. If they could have pulled his wisdom teeth at that time, I would have had them do that also!!

I figured, if we are doing this, we are going to do it ONCE, so guys, get everything done that you need to get done AT THE SAME TIME. We didn’t have any bad news, but the good news helped direct what to do next.

It is a big decision.

[Anonymous]

There is no “set in stone” way to diagnose FPIES. We went to see many different doctors, had RAST done (neg), had skin prick allergy testing for MANY foods (all neg), had an endoscopy after Addy had been on only Neocate (no solids at all) for 5 months…she was 12 months old when it was done. She had time to heal. They took biopsies to test for Celiac and another problem that i can’t recall now (all neg). They took pics of her esophagus and intestines and all looked completely normal. The Neocate had done its job! Yay! And at that time our allergist and Ped GI diagnosed her with FPIES. All of her symptoms (forgive me if I am repeating this…I can’t remember who I have told this to) were: extreme diaper rash constantly no matter what we did, bad gas, blood and mucous in stools, reflux, vomiting 24/7, fussiness and some more that I think my mind has let me block out since it was all so horrible watching her go through that. Those were the symptoms before Neocate only. Breast feeding (doing TED), Nutramigen…did not help her at all.

I hope that helps some…if you have any specific questions, feel free to pm me or post here. I hope you little one gets better! Oh, by the way, I read somewhere else that you little one was really wanting solids…IMO, I would hold off as long as possible. We waited until 16 months and Addy is a perfect little toddler. She walked at 9.5 months, talks, and does all the normal toddler stuff! BM or formula is enough nutrition…I was worried about that and it was so hard not giving her food when everyone else’s babies were getting to eat real food. In Addy’s case though, that was the best thing that I could do for her…her body couldn’t handle food and now she outgrew FPIES quicker than I had thought she could and I believe it is because she only received solids for a short time during some food trials around 6.5 months. She didn’t know what she was missing bc she had never had them.