Search Results for 'celiac'

[Anonymous]

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

[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]

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]

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]

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]

Christine,

she is drinking 1-2 ounces of neocate by mouth w/o flavoring. She is also trying to feed herself (she would not put food in her mouth at all). Our ST has given us great ideas and advice and we had been folowing and practicing them. kendra has done good. she doesn’t turned her face away as much anymore. so iam content wit the progress.

now bad news:

we have been trying new foods evry 3-5 days. kendra likes them, but has been getting sick with almost all of them (rash on her face, terrible eczema that won’t go away for good no matter what we put on it and crying). We supect she might have something going on in her guts esohagitis(sP?), Allergic Eosinophilic or celiac. We did blood work for celiac and it was negative, we also did the skin testing and they were all negative. the next step will be an endoscopy to check for all these . She will be put under again, but they will also put in her button and do evryhting at the same time. te only problem is we won’t see the GI sooner. our appointment is August 23. we supposibly are on the cancelation list. Right now the only thing she can have is pears and neocate until we know there is nothing else going on. I feel good about having a plan to look foward too. Before the doctos weren’t being helpful. I hope it works out, for Kendra’s sake.

She is gaining wt (17-12ounces now). the only problem is she can only tolerate 130-140cc at a time and she needs about 850 calories a day (or 7 feeedings a day every 3 hours). i have to give her feedings really late at night and we will have to add a 2a.m feeeding soon to kep up her wt. i really need to get a feeding pump, but they cost a lot and right now DH doesn’t have a steady job and our indurancde doesn’t cover it. I knwow God will provide; in the meantime i try to focus on the good things. the only thing that really sucks is the lack of sleep. i hardly have energy to be with dh and Melanie

Ok enough of me things are better. it could be worst. thanks for asking.

[Anonymous]

Natalia…

Have you tested to see if he has outgrown it? either by yourself or checking for true allergy vs intolerance with a specialist?

Im just curious, since with my son (non-refluxer) we messed up big with him, with the gluten free diet we switched before testing, and then messed up his celiac tests as they have to be eating it…

that said, my 3 yr old just got cleared on dairy and soy from his allergist, so I know they take longer than 12 months, but after 12 months we were told to check every 6 months with trials at home…

Im hoping with Audrey she will outgrow it all soon….shes still only neocate as shes FPIES, but Im hoping by 15 months to try food again, and hidden dairy….after her skin tests and rast tests of course.

[Anonymous]

ann marie’s information is more up to date as far as what grains contain gluten and what grain don’t contain it. it was thought at one time that oatscontained gluten, but they ave since learned that it does not. all of the new celiac info only lists wheat, barley and rye as containing gluten. our girls eat gluten free oatmeal and their Ttg tests have been good.

there are several treatments in the workings right now to hopefully treat celiac disease in one way or another.

and in case anyone wanted to know, i have now made gluten-free sweet rolls and gluten-free apple cheese danish. they were oh-so-good and i was quite pleased with myself!LOL!OL!!

[Anonymous]

According to this, there is no gluten in oats but can be contaminated as Christine said….

Occurrence

Gluten is found in some cereals (e.g., wheat, rye, barley) and their end products. Wheat grown in countries with extreme weather conditions, such as Canada, tends to have a higher gluten content than wheat grown in countries where the winter is milder. Wheat flour with a high gluten content is called “strong” or “hard” flour, and is used for breads, whereas flour with a lower gluten content is called “soft” flour, and is used for cakes. No gluten is contained in rice (even glutinous rice), wild rice, maize (corn), millets, buckwheat, quinoa, sorghum, or amaranth. Oats and teff do not contain gluten, but are sometimes grown directly adjacent to, and/or milled on the same equipment as other grains that do contain gluten, and so are commonly contaminated. Oats lack many of the prolamines found in wheat; however, oats do contain avenin.^[2] Avenin is a prolamine which is toxic to the intestinal submucosa and can trigger a reaction in some celiacs.^[3] Non-cereals, including legumes such as soybeans and seeds such as sunflower seeds, contain no gluten.

Other varieties of wheat such as kamut and spelt have slightly different forms of gluten. The gluten in spelt is more fragile than that found in wheat, and the bread dough can therefore collapse if overmixed.^{[citation needed]} Many people who are unable to digest gluten for non-celiac reasons are often able to digest these varieties. People suffering from coeliac disease are advised to avoid all forms of gluten.

http://www.answers.com/topic/gluten

monty1232007-5-29 16:14:39

[Anonymous]

kevieb wrote:

oatmeal does not contain gluten, but it is contaminated in most areas of processing and production. you can buy guaranteed gluten-free oatmeal, but it is a bit pricey. i am willing to pay the money for it because i am able to make granola and amish baked oatmeal for my girls.

buy brown rice—it is alot better for you.

everything i have read states oats contain gluten. my son cant handle oats.

What is Gluten and which foods have it?

Gluten is a highly complex protein that occurs in four main grains: Wheat, rye, barley and oats.

http://www.foodintol.com/celiac.asp

[Anonymous]

My son, who is 3 in a few weeks, did out grow his food issues (minus celiac as that is lifelong) but his soy/milk he did

He does have tons of environmental allergies though,.you cant avoid those so they get worse….getting over allergy/intolerance is all about avoiding the food, and then finally they get over them….his ped allergist said that 80% of kids outgrow there allergies by 3….he also said the only lifelong food allergies seem to be peanuts and shellfish (of course there are rare exceptions)

so there is hope…..heck my daughter is almost 11 months and cant eat ANYTHING, but I know avoiding it all now and just doing neocate will help her in the long run and outgrow it “quicker”

good luck

and there is hope

[Anonymous]

As a mom of a kid with celiac….that rash and the fact you are eating alot of wheat….send off HUGE alarms. I think alot of people dont realize that wheat (and oats,barley, rye) can do tons of damage to the body, as soy and milk can. The rash totally looks like noahs old rash and not like Audreys excema. and also bloody stool can show wheat issues…

I would cut out the wheat and see what happens.

I know vax’s can do horrible things also, but if she still has it and its been a few days then I wouldnt think its the vax, plus while I know drs can be dumb…it would be horrid of him to have seen the rash and dismiss the HIb link if there was a chance….

I would cut out the wheat.

[Anonymous]

Hi there.

Welsome to the site. I’m sorry to hear what you’re going through with your son. My daughter is turning two and we’ve been dealing with a feeding aversion almost since she was born, it seems. She also has reflux. Her aversion was really bad, and the only way I could get her to take any breast milk or bottle was to feed her when she was asleep, and even that was a struggle. We were facing a feeding tube for a long time, because it was just impossible to get her to feed, and later to eat solids.

What types of symptoms did your son have with his reflux when he was younger? Did he vomit or was it silent reflux? Did he eat? What was his temperament like? Did he sleep? Did he have any testing done? What type of meds was he on and how much? Does he have any allergies?

As for what he’s going through now- Can he talk? Can he tell you a bit about what’s wrong if you ask him?

Interesting that he was diagnosed with asthma, because that can also be a complication of uncontrolled reflux. The stomach pains make me curious about food allergies, or I guess even celiac. I think it’s a good thing that you have an appointment for a ped GI. I know that the appointment isn’t until August, but I would ask to be put on the cancellation list, and I would also call daily or every couple of days to see if there have been any cancellations. Tell them the gravity of the situation, and that you’re really concerned about his lack of intake.

I would also ask your ped to up his dose of medication. I don’t know how much he weighs, but I’m pretty sure that his dose is probably too low even based on conservative measuring. You might want to check out Laura’s intro stickied in the introduce yourself forum, and also http://www.marci-kids.com . Marci-kids is a great site in terms of reflux info- beware that they believe in very high and frequent doses of PPI, but even the North American society of pediatric GIs recommends at least 1-15mg/kg a day (which is also very low). In terms of the losec, I’m not sure how you’re giving it, but if it’s the capsule, then you need to give it on an empty stomach and follow it up with a meal 30 minutes later. You can sprinkle the capsule in a spoon of applesauce or something acidic but make sure that he doesn’t chew the little beads. You might want to try to get the prevacid solutab if you have it there- it might be called zoton- but I’m not sure if you have it. Do you have something like mylanta supreme that you can give and see if that makes a difference? If so, don’t give it near the PPI.

While waiting for the nutritionist, can you see if he’ll take a supplement like pediasure? That way you won’t have to worry as much about his lack of intake. I would also go back to the ped and see if he can push getting you in faster.

As for what do, I really think that you need to get some help from a specialist who can figure out what’s going on. I would probably push for some testing- maybe an endoscopy and/or a PH probe to see if it’s actually reflux that’s the problem and if there’s any damage. Like I said, allergies also comes to mind.

I would also try to get help from a feeding therapist to help give you some guidance, but really you have to get the root of the problem under control. While waiting, you can try to add calories to what he is taking in- give him calorie dense foods, and add butters and oils to his other foods. I would try supplements- pediasure, carnation instant breakfast- I’m not sure what you have in Australia. I might also call back the nutritionist and see if she can give you any suggestions or tips over the phone for things that you can add to his current intake to boost calories and nutrition. Here we have something called duocal which is calories and fats that are almost tasteless that you can add to liquids or foods. Ask your ped if he’s old enough to start a multivitamin so you don’t have to worry about nutrition.

I know how hard it is to watch your child seem to starve in front of you. It’s such an awful feeling. That’s why it’s so important to try to push for earlier testing. If things get really bad, you can always go to the ER, but of course, no one wants to go that route unless they have to. As for eating, I would just keep offering, but not pushing. If it’s any consolation, Hailey NEVER eats anything for breakfast (which is awful, I know), and goes from dinner the night before with a bottle before bed, to nothing until lunch, a small lunch, and a small dinner. We add extra calories through oil/butter on everything, and try to encourage fluids. We also try feeding her on the go things that she likes which sometimes helps, or do things like picnics etc that get some food in when she might not realize it outside of a typical meal situation.

Good luck to you, and hang in there. I remember the feelings of despair very well, and still get them sometimes when I don’t know where to go from here, and few people seem to see that we have a problem. Keep us posted.

BTW, Therese (evergreenie) is also from Aus, so maybe she can offer you some tips or advice.

[Anonymous]

I am a celiac (intolerant to wheat oats barley and rye) and used to get rashes like that prior to diagnosis. Try eliminating these grains from your diet or formula (my Johnny is doing great on elecare) and use Cetaphil gentle cleanser and lotion and perfume and dye free detergent on anything that touches your baby. I hope this helps! You’re little sweetie is GORGEOUS!!!!

[Anonymous]

there were no welts, none. except for the control (histamine) which was huge (and I think they gave it a 3-4..I’ve only heard of numbers to 4 for skin testing)
I kept looking and looking since my older daughter had huge welts almost instantly both times she’s been tested. first time she actually swelled really bad even her feet in her shoes! they cut the dose of egg to 1/1000 for her this time and she still was a 3 in less than a minute. I couldn’t believe there was nothing on Maggie. They had three nurses and the doc come in and double check since they were so sure she was going to have multiple food allergies bc of the symptoms. Our allergist says any response (blood or skin test) at any number, even if it’s not the “typical” number for a reaction, is to avoid the offender at all costs.
I guess that is where I am at a major loss with Maggie. I am not sure what to avoid. I mean, what do you do with a kid that throws up prunes, bananas, sweet potatoes, and other veggies? I kind of got avoid proteins (meats/beans and such) but what about this other stuff? how does that fit in?
I have no true idea about celiac.. afraid of grains right now.
Our allergist is awesome, though. he gives us copies of everything and is willing to help as much as he can. so much better than the last one i had to fire. Any ideas as to what to ask/expect from him? I know he will do all that he can, but as we are the only case of this, where do I point him??
You guys are awesome! I should have come here a month ago with all these questions. Could bang my head for that!
Thanks!