Search Results for 'celiac'

[Anonymous]

rice cereal doesn’t have gluten in it, and a child can’t get celiac until they start to consume gluten—i second what laura says.

[hellbennt]

well I wouldn’t jump right to celiac- what I would jump to is upset belly bcse he’s young and his digestive system is immature…so I would stop the cereal and see what happens? also how long has he been on the prevacid? if it’s under 2 weeks & he’s not on any other meds, then it could be like he’s not on any meds at all (bcse the prevacid can take up to 14 days to show it’s effectiveness)

[Anonymous]

Grant was doing pretty good feeding were by no means normal but he was eating 5 ozs at a time then he went on prevacid and thickened feeds( organic rice cereal) and than Saturday boom he became miserable and started only eating 1 oz at a time and acting like he was in pain. Could it be Celiac? Or am I just pulling things out my butt trying to figure out why Sat. he went down hill?!?

[Anonymous]

US laws on labeling are different than canadian labeling laws. if a product is made in the united states, wheat HAS to be listed as an ingredient—-even if it is part of “flavoring”. it used to be that you could not trust certain things on labels such as: flavoring, modified food starch, caramel coloring—there are some others, but i can’t remember them off the top of my head. we no longer worry if we see any of these things listed on ingredient labels because the new labeling law went into effect in 2006. there should be nothing left on the shelves anymore that contains any of the top 8 allergens without it being declared on the ingredients list.

i have a friend with celiac disease, and she was still holding on to old information and had not kept up to date with the new things they were discovering about what is safe and what is not. when my girls were first diagnosed, i searched and searched for info so that i could keep my kids healthy. before long, one of my girls told me that i knew more about celiac than my friend did—-and she had been diagnosed for 8 years.

i think that sometimes the people who have been dealing with wheat and gluten problems for a long time fail to keep up with the most recent news and don’t realize what the new studies and labeling laws are. i am friends with another gal that was the first person in this area to be diagnosed with celiac, and she was still holding on to some old info. also, i have my kids blood tested on a regular basis, which will tell us whether or not we are getting any gluten in their diets. molly, who does not cheat on her diet, always has good blood work—-so i know we are keeping her gluten free. the twins are another story!!!! they were both cheating on their diets and had raised Ttg levels—which means they were eating gluten. kassie gets sick—which should help to deter her, but she still cheated anyway—her levels were 40-something. (20 and below was normal on the test that was used) tianna does not get sick, so there was nothing to stop her. tianna’s levels were through the roof—–204!! as of last testing, kassie was down to 21 and tianna was down to 40-something. they were both working at fast food establishments—-but not anymore.

products that come from outside of the united states are another story, since they do not have the same labeling standards that the US has—so you need to be more careful of those products. even before the labeling laws came into effect, modified food starch was more than likely to be made from sources other than wheat—so we had quit worrying about it.

i still occassionally buy something by accident that is not safe for the girls because i didn’t read a label.

i don’t mean to sound like a know-it-all, but i really put a lot of time into reasearching when my girls were diagnosed and i feel like i have a pretty good field of knowledge when it comes to avoiding wheat and gluten.

there are a couple of things that people get confused about, such as monosodiumglutamate—-it is gluten free, but doesn’t sound like it because of the “glutamate” part—(but it probably isn’t good for you anyway for other reasons). maltodextrine is also safe, but sounds like it might not be because of the “malt” at the start of the word. rice crispies are not safe because they use barley malt or “malt” flavoring. buckwheat sounds like it is a form of wheat, but it is actually a member of the grass family—–and don’t let anyone convince you that spelt is safe for a gluten free diet. some people that are allergic to wheat can tolerate it, but it contains gluten.

do you know if the owner of that store has ever been tested for celiac, or if she has just figured out that she has gluten/wheat issues by trial and error? it sounds like she might have something more going on with her health. there is no medication that will help with celiac if you accidentally get “glutened”—-except maybe to relieve the symptoms. also, celiac does not damage the stomach, it damages the small intestine, so there isn’t a stomach surgery that would help with it, either.

bette hagman has a book called “the gluten free gourmet bakes bread”. she gives a number of gluten free flour mixes in it and it has alot of different bread recipes. alot of the recipes have variations for various allergies, such as milk and egg. you might be interested in it since you have been craving bread! the basic featherlight bread is the first bread one of my twins tried baking. when it came out of the oven, i cut a piece and put butter on it while it was still hot. it tasted just like regular wheat bread fresh out of the oven—–i quit crying after that!

i wish we had a gluten free specialty shop near us—-i have to buy specialty gluten free products here, there, and on the internet. our health food store carries more products all the time, but they are a little higher priced. if you like the tinkyada pasta, you can order it in bulk through azure standard for a cheaper price. also, walmart specifically labels all of their store brand products that are gluten free. we also buy some of their things that are not specifically labeled, if the ingredients list looks safe—-and molly’s blood tests stay clean.

can you tell i took my meds a little while ago—–i have rambled on and on!!! i apologize ahead of time if anything i wrote sounds offensive—it is not intended to be that way.

[Anonymous]

you just go right ahead and cry all you want!!!!! i do it on a fairly regular basis and sylvia is 5 years old now. on those days when you think you just can’t find anything positive—-just remind yourself that you haven’t slit your wrists.

i can still remember standing in the aisle at walmart and trying to keep from crying as i read labels when my girls were first diagnosed with celiac disease. i had several meltdowns and wished that it was me instead of them. some months later, when i told a friend that my girls had been diagnosed with celiac, she turned to her husband to tell him what it was and said that is was a “nightmare for mothers.”—–and i remember thinking, ” it’s not THAT bad.” i had really come a long way.

it is amazing, the strength that you can find within yourself, to deal with life and it’s difficulties when you have no other choice—-but sometimes it takes friends, doctors and even medication to be able to do it. you have a bunch of women on here that you know you can lean on—–why do you think i still come here when sylvia is 5 years old and reflux-free since her fundo at almost 10 months old—-it is because the gals on here have been so supportive with all the challenges we have faced—-long after sylvia’s reflux was no longer a problem. even the newer people on here that weren’t around when sylvia was sick have been helpful and supportive—-and the funny thing, is that i am the oldest mom on here, with the most kids, and should be the one with all the answers—–LOL!!LOL!!LOL!!! nothing like kids to make you feel totally inadequate at times.

so…..cry away……..i’ve always been told that it releases chemicals that help you to feel better.

i have a tendency to talk alot about a half hour after i take my meds—-(it lasts for about 1/2 hour) obviously i get just as “chatty” when i type after meds, too.

kevieb2009-01-25 21:31:32

[Anonymous]

not to sound smug, but i think i know quite a bit about celiac disease—-out of necessity, since we have lived with it for 3 years now—-and your allergist is an IDIOT when it comes to understanding celiac. there is no “typical” celiac description like they used to think there was. all 3 of my girls had different symptoms—–kassie was nauseated and had the runs, tianna had rashes, and molly had no symptoms. and, as far as you not having it, neither kevin nor i have celiac, and as far as we know, no one in either of our families has ever been diagnosed with it, and yet we still have 3 girls with it—-you at least KNOW it is in your family genetics.

since kevin and i both carry a celiac gene, we now know that at least one or both of each of our sets of parents also carries the gene.

as far as the allergies, eczema does not necessarily indicate allergies. i have atopic dermatitis and it is not connected to any allergies. also, allergic shiners aren’t always necessarily allergic shiners—some kids just have circles under their eyes because they have skin that is fair.

kids can outgrow a number of food problems with time, although i THINK that shellfish and nut allergies are considered a lifetime diagnosis and they usually cause anyphilactic reactions—-i’m sure i spelled that wrong.

considering how wrong your allergist’s info is on celiac, i would wonder how up to date he is on the rest of his info—–i vote for getting another opinion.

[Anonymous]

I’m so confused right now. Recently(Fri) we got a call from the Ped that my DS’s RAST testing had come back and it was POSITIVE for SEVERAL foods(milk, eggs, beef, wheat, soy, pnuts, almonds). So, today we had an appt w/an allergist. This allergist basicly told us that Ryan does NOT have any food allergies. WHAT THE?! Don’t get me wrong, that would be GREAT, but huh????? He said that he doesn’t even like testing blood for food allergies(it’s not accurate) and that Ryan’s levels(excluding eggs) weren’t even high enough to be considered allergy. OK, so why does the test specify that anything over 501 is showing an allergic reaction and all of Ryan’s levels were close to anywhere from 600(soy)-5590(eggs)? Does anyone have any experience w/this to be able to tell me if we should get a 2nd opinion? He also said that Ryan doesn’t need to watch any foods that he eats and that he doesn’t “fit” the typical signs of food allergic. Then why does my Ped insist that he has allergies everytime we go there b/c mainly of his allergic shiners?! I’ve read in great length info that Sheri has posted and having done research online, I just don’t know what it all means in regards to Ryan’s tests. What should we do? The allergist said that if Ryan isn’t vomitting, diarrhea, instant rash/hives, or wheezing…then he has no food allergies. Well, NO, my child doesn’t have those symptoms but this is what he DOES have…Allergic shiners, eczema(has recently been improving). So, based on what he said, should we just ignore those results(RAST) and cont feeding him the foods he’s always eaten? Also he didn’t think it was necessary to test Ryan for celiac b/c he doesn’t “fit” the typical celiac description and b/c I don’t have it(my aunt, & great uncle have it). One more thing…He said that, “Obviously he has some sort of allergy going on in his system b/c his IgE levels were elevated.” But the allergist was thinking more environmental/seasonal allergies. PLEASE HELP ME!!! I’m so confused right now. What should I do?

[Anonymous]

Tried to post and lost it, so sorry if this is a repeat:

Thanks for the links, they are very helpful. Because of my sons strong food aversions when we started him on meds (another symptom that led us to believe it was reflux) we went with the Prevacid capsules and just convinced him eating a bite of applesauce was worth the hoopla. Now that he’s back on dairy we give it to him in cottage cheese (also approved by Prevacid Web site) and he loves it. We have never been able to get him to swallow medicine (motrin, mylanta, pink antibiotics, etc.) but he’s developed a real sweet tooth so maybe we coul sell him on a different medicine if need be. I did not mention but should that he is growing fine. He started life at 9 lbs. 15 oz. and while he fell of his growth curve, his doctor was not concerned, says that happens. Also, his tests for celiac and the blood stool test were both negative.

[Anonymous]

amber, both of those tests are blood tests. they only do biopsies if the tests come back positive—-which is totally beyond me, because my girls didn’t show damage in their intestines. tianna did show some slight changes in one spot. i asked the doc about them not having damage, and he told that they probably did with their test result numbers. he also told me that the small intestine is about 22 ft. long and that the scope can only go in about 6 feet. also, celiac damage can be spotty, so if they don’t happen to biopsy a spot with damage, the biopsy will be clean. a positive Ttg test is almost totally exclusive to celiac disease, so if it is positive there is next to no chance that you don’t have celiac. plus, if you go gluten free and then do blood tests on a regular basis, you will be able to tell if the gluten free diet is lowering the Ttg levels.

i order gluten free flours in 25 lb bags from bob’s red mill. the price is alot cheaper than the small bags that the stores carry, but the shipping seems kind of high. someone recently told me that winco will order from bob’s for you in bulk and you don’t have to pay the shipping since they already order from them—i’m going to check it out soon.

a major diet change is so overwhelming at the start—but in time it becomes normal. celiac disease is not hard, but it is inconvenient.

[Anonymous]

Thanks Christine! I know that in order for celiac testing to be accurate he will need to be ingesting gluten. I guess I was just thinking, “Do I really need to put him through that or just take it out of his diet anyways.” What does the test entail? Do they take biopsies in order to test total IgA serum and Ttg IgA? He would have to be put under? I’m just nervous. I’ve read that anethesia contains egg and he’s highly allergic to eggs. Or do they just test the blood? :):)

Laura~ Thanks for all the helpful links. I’ve gone through quite a few of them, plenty of info. Although, I’m not much of a cook so some of the foods I don’t even know what they are, what they look like, where to find them. 🙂 lol Plus, the BIGGEST downside is that we don’t have a whole foods around here(or one like it). I found an allergen free store, but MY GOODNESS are they EXPENSIVE. I about died. I’m sure I’ll be posting about foods here shortly. First we need to find out what all he’s allergic to.

THANKS AGAIN!

[hellbennt]

some ‘random’ info I have saved:

One of the most useful ones I think is Jax Peters Lowell, Against the Grain: the slightly eccentric guide to living well without gluten or wheat. It’s more of an informational book than a cookbook (though it does have some very good — and simple — recipes) but I found it quite useful for what to look for ingredients wise, what I could or couldn’t eat at restaurants, etc. from Christine, Palmer’s Mom https://www.infantreflux.org/forum/forum_posts.asp?TID=4225&TPN=2

http://www.celiac.com/index.html
http://www.csaceliacs.org/
http://www.calgaryceliac.com/

And some yummy gluten free blogs!

http://glutenfreegirl.blogspot.com/
http://glutenfreegoddess.blogspot.com/

gluten free casin free: http://health.groups.yahoo.com/group/GFCFKids/

amazing website for those with dairy allergies:(mspi)http://web.mit.edu/kevles/www/nomilk.html

http://www.kidswithfoodallergies.org/recipes.html

VegWeb – great site for getting egg/dairy free recipes. I’m not vegan so I add meat to some of the recipes .. but this is the best site I’ve found to get baking recipes that don’t use eggs and dairy.
http://vegweb.com/

gluten/celiac: https://www.infantreflux.org/forum/forum_posts.asp?TID=4988&KW=gluten

Egg replacer http://www.ener-g.com/store/detail.aspx?id=97

(yup)info about labels (hidden dairy, eggs, & more):https://www.infantreflux.org/forum/forum_posts.asp?TID=1292&KW=parve

great allergy-food site with a ton of good kid’s things…http://www.allergygrocer.com

[Anonymous]

have him tested for celiac BEFORE you put him gluten free or you will screw up any testing you might want to have done in the future and you might end up eliminating foods that you don’t really need to eliminate—and with his allergies, you don’t want to eliminate anything more than you already have too.

untreated celiac disease can lead to other food intolerances. it is definitely a good idea to test him since you know it is in your family. make sure that the right tests are done. he needs to have a total IgA serum test and a Ttg IgA (tissue transglutaminase). some docs may even run a few more than these—but a Ttg test is the most accurate test.

he is just reaching the age where the tests are more accurate, so your timing is pretty good. just make sure he is eating gluten when you have him tested.

hopefully, he is going to outgrow some of those allergies over time.

[Anonymous]

I found this forum months ago due to my DDs reflux and intolerances and I’m sitting here in shock b/c of my DS. I always thought something was affecting him and now we know for 100%. He has been complaining of knee pains for quite some time now and finally I had the Ped run RAST testing in addition to all the other stuff she was checking out…

She called me today and told me that he’s ALLERGIC to Milk, Egg, Wheat, Beef, Soybean(peanut, almonds, all tree nuts). I thought he had a problem w/milk, but never in a million years would I have been prepared to here that! I don’t even know what to feed him now. She’s referring us to a nutritionalist, but I don’t know how long before we get seen. I’ve been trying to find a food store that deals w/allergen free foods(I’m checking it out tmrw). I cried earlier when I tried explaining to him why he couldn’t eat a cookie that he had helped Mommy bake yesterday. I just feel horrible that he’s gone all this time eating these foods that he’s allergic to on a dialy basis!

I’m freaking out too b/c I think, “What does this mean for Averi?”…The Ped thinks that Averi will be even more allergic. I know there are plenty of Moms on here who deal w/MFPI and some who deal w/MFPA…How do you do it? What do I do when it’s time for him to go to school? Am I overreacting?

Thanks for listening. Any Advice is welcome!!!

Oh, also forgot to mention…I asked about him getting tested for celiac(my aunt was just diagnosed and my Dad may also have it). Should I go this route? Or should I just make him gluten free w/o the testing? TIA!

[Anonymous]

sheri—after you mentioned the symptoms you get—-i’m wondering if you have ever been tested for celiac disease?

i’ve thought that maybe i should go totally gluten free with my kids to see if it helps my fibro after you had told me that you felt better when you went gluten free. i know i haven’t developed celiac, because i just had a blood test done again.

also, if a child has celiac disease, sometimes the problems with milk will go away once the intestines have healed from the damage the gluten has caused.

[Anonymous]

personally, i would go for the longer time rather than the shorter time on gluten just to hedge my bets. i’ve heard people say all kinds of things about how long someone needs to be on gluten to get a positive result if they really have celiac disease.

when tianna was at seattle children’s hospital, they thought they were keeping her gluten free—-and her blood tests were over 100 when she came out of there—–the test was 12 when she went in. our ped gi said it didn’t take much and i know that even a crumb can set off the autoimmune reaction.

the test that our doc runs for the first time is a total IgA serum level and a Ttg IgA (tissue transglutaminase). ask your doc what tests he is ordering.

my three girls all had different symptoms from each other—-and i have heard of people with even different symptoms from my girls. my molly didn’t have any symptoms except that i used to think she looked so fragile and thin—-her wrists looked like they would just snap—-but she was as tough as nails.