Search Results for 'celiac'

[Anonymous]

So my ds is still having major symptoms–arching/crunching at every bottle except the first one, terrible diaper rash, crying/uncomfy all day long, and 2 or 3 20-30 min naps/day. I finally talked to the GI today, and she said it “could be the rice cereal” and to start thickening with oatmeal instead. What does that mean if it’s the rice cereal? Does that mean an allergy or an intollerance…could it be celiac or something else? Is this something like the milk and soy that he’ll grow out of?

Also, I mentioned it to Beth in another post, I’m thinking of using Simply Thick instead to take out all those extra calories and any other irritant factor, does anyone else use it?

Thanks!

[Anonymous]

Hi Denise! Yes, I am in MD! We just got a GI here. It’s a long story. Landen is having some severe issues again and will need a 2nd endoscopy. We are going to see Dr. Carmen Cuffari at Johns Hopkins Childrens center. I have no idea how he is with dosing b/c our appt is Dec 10th. Editing to add: we won’t be needing help with reflux, landen is having irritable bowel/EE/Celiac-like issues. We aren’t sure which.

I DID get a rec’d before I moved to MD to see someone in the DC area from this board. A GI that encourages Marci-kids dosing. Is that who you are going to see? Otherwise, our pedi here in MD gave us 30mg PPI when we moved here (I was THRILLED) and at that point didn’t need a GI doc at the time, so we stuck with her! LOL. She is in Sykesville if you want her info, but I know you really probably want a GI and not a new Pedi! Just throwing it out there though!!!

jilly782009-11-28 21:39:48

[Anonymous]

i never knew there were numbers connectected to the odds of a baby having downs—i just know that my test came back abnormal–which freaked kevin out, but the doc had already warned me that it was going to come back as abnormal.

as far as whether or not there are intestinal issues with downs, there is a higher cahnce of having celiac disease with downs.

[Anonymous]

i was going to suggest testing for celiac since untreated celiac can cause other food problems—but i see that you have eliminated gluten.

[Anonymous]

Hi Valerie,

So sorry I’ve been out of the loop/thread for a week. We went out of town w/o the kids last weekend (yay!) & then we’ve had 4 appts for Evan this week so I’m literally drowning in catch-up (email, paperwork, lists, etc).

Anyway re: calcium supplement. No, Evan does not get any right now b/c he’s on rice milk & it’s fortified w/ calcium. I would definitely talk w/ the dietician about that…
maybe try to find some child-friendly brands before you go…
http://www.celiac.com/gluten-free/index.php?showtopic=61629

Both the brands discussed (Rhino & Bluebonnet) I’ve heard good things about… & have direct links to them if you’re interested.

Also, here’s a list of calcium-fortified foods (I KNOW your ds can’t have many of these but I”m not sure about some of the others…):

-breastmilk (studies have shown that breastfed babies get plenty of calcium, even if mom doesn’t eat dairy products)

-dark greens: broccoli, spinach, collards, kale, turnips, bok choy, parsley, mustard, dandelion

-tofu and other soy products

-beans: chickpeas/garbanzo beans, navy beans, pinto beans,

-nuts & seeds: sesame seeds, sunflower seeds, almonds, filberts/hazelnuts, cashews, nut butters, tahini, walnuts

-sea vegetables: nori, kombu, wakame, agar-agar

-grains: tapioca, quinoa, tortillas

-seafood/fish: shrimp, salmon with bones, mackerel with bones, sardines with bones

-herbs: borage, lamb’s quarter, wild lettuce, nettles, burdock, yellow dock

-calcium-fortified orange juice

-Total cereal (calcium fortified)

-Gerber Graduate juices (calcium fortified)

-Sunny Delight Calcium orange drink (calcium fortified)

-Rice milk (calcium fortified)

As far as the biopsies are concerned, I get what they’re saying (re: seeing if his reactions are GI related or *just* -haha- skin & reflux) BUT doesn’t his stool reflect that?! If his stools turn to mucous &/or blood (plus color & odor change) then his intestine/colon is most certainly inflamed so there wouldn’t be any need for looking further… but that’s just my opinion. Also (& I just learned this from the dietician) if you give him foods that he’s severely intolerant to that will most likely ‘kill’ the celia in his intestine, thus causing malabsorption & further affecting his growth… it then takes about 3 months for those celia to ‘grow’ back (ie: recover). Again, just my opinion though.

As far as the celiac testing is concerned, I will say that Evan has some huge red flags for it but since we are NOT going to put him on gluten (or anything he’s intolerant to) b/c of the above mentioned issue (ie: celia dying, affecting growth further, etc) the dietician suggest myself, dh & our parents get the bloodwork done for celiac panel just to get more info. Who knows if that’s accurate &/or if it will tell us anything so I’ll let you know.

We just finished our 1st round (of many-lol) of allergy testing. I honestly was not at all optimistic that we would find any info that we didn’t already know (since I’ve monitored Evan’s food trials like a hawk) BUT I will say it gave us some new info. We did RAST bloodwork, immediate skin prick, & delayed patch testing.

We did the bloodwork a couple weeks ago. Nothing showed up (not surprisingly).

We chose about 12 foods for immediate skin prick.

Then, we chose 5 (from those 12) for the patch (could only fit 6 patches on his back & 1 had to be ‘control’).

The only thing that showed up for immediate skin prick was chicken (VERY surprisingly since I specifically remember – & have it logged – the trial & all was fine for 5 days straight).

For his patch testing (they were put on Monday morning & taken off Wednesday morning) he was positive for milk, soy & wheat… & borderline corn (which was slightly surprising).

Anyway, although I was not at all optimistic about the immediate skin prick or delayed patch I’m glad we did it & glad we got *some* answers. We now will make another list of 10 for immediate & choose 5 of those for patch & go back in another month (I’m staggering his allergist, dietician & GI so I can chat w/ everyone… I also see his general ped about 1x/wk but only b/c he lives around the corner & we see him & his family while we’re playing outside).

I thought I saw on the hemp milk website (the original one that Amber posted) that the unsweetened, original didn’t have any ingredients that would bother your ds (ie: rice or oils). Hmm… I’ll have to look again. Okay, just looked & I *think* he could have it…
here’s the link:http://www.worldpantry.com/cgi-bin/ncommerce3/ProductDisplay?prmenbr=655972&prrfnbr=2422465

Have you considered putting your little guy on a PPI like Prevacid to see if it helps him?! Like I said before (I think)… Evan was fine w/o any reflux meds (Axid, as needed but rarely) as long as I was exclusively nursing him w/ a VERY strict diet… but when he started solids (not a whole lot -but even just squash & apples) he did need to be put back on meds… which I’m totally fine with. Just a thought!

So sorry the Neocate trial failed & hang in there – you’re doing great!

ETA: no clue why my links aren’t showing up as click-able – sorry!

eta: sorry to edit your post but I tried to make the links work- they work now
hellbennt2009-09-25 21:47:11

[Anonymous]

beth, this is just one of the tough things of life that as mothers are really hard to deal with. i brought a stash of treats that were safe for molly for her teachers to keep when treats were brought that she couldn’t have—-it’s just the way it is. OUR kids have the problem, not everyone elses, and it’s OUR kids that have to learn how to accept that they have a problem that will make certain things in life different for them—such as not always being able to eat the treats that another child brings for their birthday.

getting to decide what to bring for their birthday treat is a BIG DEAL for some kids—it’s their special day. it’s not really fair for us to say that some other child can’t have recognition and a treat he chooses on his special day because one other child in the classroom can’t have it.

i think it is a VERY generous offer to make all the treats for the year, but the other kids need to have their chance to choose what they want, too.

i love the idea of making a similar treat for cooper, but the problem, is that not all parents are organized enough ahead of time to know for sure what they are going to bring—sometimes it is a last minute deal when they get birthday treats—-like on the way to school.

also, in our school district, children are only allowed to bring prepackaged store-bought treats to school—-nothing homemade.

i really hope this doesn’t sound harsh, i don’t mean it to be that way at all—especially when talking to a hormonal woman—i going through major hormonal problems plus the bipolar problems.(talk about a crazy woman) so i understand how easy it is to get upset when our kid have a problem that makes them different—and there is nothing we can do to fix it. i have several breakdowns in the past over my kids having celiac—-and i carry alot of guilt about it, too, for some reason.

the best thing we can do for our kids is to help them understand that they arespecial children, no matter what problems they have, but also help them to understand that sometimes those problems aren’t always going to be easy to deal with.

we have actually started letting molly eat school lunch this year. she is at the high school now and they usually have at least a salad, if not some other things that are gluten free. i think it makes her feel more normal—–and she is probably eating better than the lunches she used to pack. we’ll see how her blood tests come out the next time they are done.

just make sure that the stash of treats you bring for him are REALLY GOOD treats—it just might help ease the feeling of being different. i’m sorry for your heart breaking over this, because even though you didn’t say it is—-i know it is because i live in that world, too. i just keep hoping that none of my other kids get celiac since 8 of my 9 carry the gene for it. odds are, we will have grandkids with it even if none of the other kids get it.

[Anonymous]

Thanks ladies for all the tips!! I posted a reply yesterday, but it seems to have disappeared!! 🙁

I will look into the hemp milk, I was also considering trying coconut milk since it’s high in fats. The only problem is that it doesn’t have much calcium in it at all, which I know he needs. Since he can’t eat any type of dairy or soy products, this is going to be an issue for us. Do you give any type of calcium supplement??

I make all of his foods at home from scratch because he doesn’t tolerate most preservatives either, so we pretty much never go out to eat….hence the isolation part of this that I hate so much!! The two times we went out, I ordered a plain baked potatoe with nothing on it….later found out that one of them had butter on the outside of it, which he of course reacted to! We have been wheat and gluten free as well at home, so definitely not cross contaminiation going on.

Regarding the scope-I say they are going to be biopsies, but I don’t know that for sure. They want him to be reacting when they do it so they can see the inflammation, etc. and take skin samples to test for eosinophils and anything else they can. I know they won’t be able to test for celiacs because he’s been off wheat and gluten for so long. The dr. said 3-4 days before since he thinks they are allergic type reactions, but I might actually start a week before with me eating the offenders since they take longer to build up through my BM, and then 4 days before start feeding him directly. The only thing I’m afraid of is dairy…..he projectile vomits when he gets it through my BM. I have never given him any form of dairy directly, so I have no idea how he’ll react to it.

His spitting up seems to be lessening a bit, but he’s definitely still refluxing. We can hear him “urp” things up and swallow it back down quite frequently. I realized last night that I had eaten an Asian Pear a couple days in a row, and I’m wondering if that on top of getting over the oatmeal has triggered the reflux. HE’s so weird, because he reacts to foods in the same family as those he can eat. He can eat zucchini and yellow squash, but has a horrible reaction to butternut squash. I can eat other pears, but if I eat those Asian Pears he starts vomiting again. Weird!

so far, he seems to be doing okay with the neocate, but he’s only gotten 1/2-1 ounce the last two days. I thought I saw a couple of dots start popping up on his face, but I’m going to give it a couple more days of exposure to see if it gets worse or not. I’ve been giving it to him at meals, and the last two nights he started screaming in his high chair after he drinks it and has been really hyper after dinner (not like him). I’m going to have to watch this as it could be a behavioral change reaction from it?

He had shots a month ago at his one year appointment. The only side effect we saw was he developed a bumpy rash about 2 weeks after it on his chest, neck and face (maybe from the chicken pox vaccine?) It didn’t seem to bother him so we didn’t take him in to the dr. or anything, and it wasn’t bad.

[Anonymous]

Valerie,

Yes, it is nice to know that someone else has a baby with such a sensitive system. Though I would never want another person to go through this it’s reassuring to know you’re not alone.

I didn’t realize that the oils were such high ingredients in the Neocate… I would guess then that if he’s reacting it’s probably that. I would though wait for other reactions (ie: skin &/or stool) to “call” it a failed trial – maybe not just go by the spitting up. Does that make sense?

Evan can’t do oatmeal (or any gluten at all but oatmeal in isolation was a really bad trial). The rice milk does have safflower oil as the #3 ingredient so until you get the oil thing figured out you probably won’t be able to accurately trial that either (fwiw, we trialed rice by itself 1st before jumping to rice milk b/c Evan had previously reacted to sunflower & safflower oils).

I just looked @ the Hemp Milk ingredients that Amber suggested & the unsweetened kinds don’t contain any rice or oils… so perhaps that could work?! Btw, thanks Amber b/c I will look into that for Evan maybe in the future (for now I’m going to stick w/ the rice milk + Duocal calorie supplement).

I will say that our dietician says that the cross contamination in restaurants or fast food is a problem for Evan. He was eating a lot of Wendy’s or Chick-fil-a french fries but he said that the amount of gluten on them (from being fried in same oil as breaded chicken) was enough to disrupt his system & ‘kill’ his celia (they are highly suspecting celiac for him) which then causes malabsorption & thus, stunts his growth. Anyway, I don’t know if you’ve been preparing everything @ home or if you’ve been preparing everything separately but that’s something to think about.

We didn’t get the referral for the dietician until Evan’s 15 mth ped GI & general ped appts. He actually was growing slowly, but at a steady rate until between 12-15 mths. This was when he a) weaned to rice milk, b) expanded diet from 5 things to about 20 things, c) we took a break from enzymes & probiotics & d) we did a wheat trial that damaged his system to increase the malabsorption. The dietician says that Evan eats enough caloires & a enough variety that he *should* be growing/gaining at a normal rate but obviously he’s not.

I know the frustration & the fear… it really is so hard. Hang in there.

Evan had scopes @ 10 wks old & actually will probably be scoped sometime in the next 6-12 mths again. What are they doing biopsies for?! They don’t want Evan eating any offenders when he gets scoped b/c they want to see if he’s damaged w/o eating direct offenders (if that makes sense). That will be hell for you (& your little guy!)… and do you think the 4 days will be enough!?! Hmmm…

Oh, also – has he had any vaccines recently? This can certainly cause an increase in reflux &/or intestinal reactions (does everytime w/ Evan). So, that would explain the increase in reactions w/o pointing to any foods. I know he’s almost 13 mths so I thought maybe he recently went in for shots.

[Anonymous]

I have been waiting for these flours but I haven’t seen them here at Walmart or Meijer. We are suspecting that my DD has celiac but she has not been scoped yet and as usual she was negative on the blood test.

Thea

[Anonymous]

amber, i don’t think looking for eosinophils is the same as looking for celiac as far as hit or miss. i could be wrong, but the reason i say this is because when kassie had her scope and biopsies, (and we didn’t suspect celica at the time) our ped gi came out and showed me the pictures from the scope. you could see white spots all the way down her esophagus—even without having to look at it microscopically. the doctor told me that it was either food allergies or thrush. so, i am assuming that food allergies are more visible to the naked eye, but also resemble the spots that a fungus infection makes. he said they would not be able to tell without looking at it microscopically, but the lesions were defininitely obvious to the naked eye. they turned out to be thrush—–and they didn’t pick up that she had celiac disease. of course, they biopsy in a different place for that and they weren’t looking for it.

i think i’d have the skin prick done again, too. we have had sammie skin prick tested and it showed nothing—but looking in her nose and throat, the allergist says that he sees allergies. the plan was to wait a little longer and then do the sub-cutaneous needle tests. i think i should have gone back in by now, but i know she will just die when she finds out what they will be doing to her. when they had her breath into the tube—-she showed almost borderline asthma, though she has never had any asthma problems. i did just read in my journal, though, that as a baby she had raspy lungs once. she often wakes with puffy and red eyelids.

can allergies affect their behavior, she is hell on wheels, adorable, but she gives me a run for my money.

[Anonymous]

Okay, I like what you are saying. I don’t know about it being the right spot. But, I like the idea of doing a skin prick rather than a RAST. He was a year before and now he’s two.

I’m going to make an appointment tomorrow for the skin prick. I hope they can get him in ASAP. Last time it was a 3 month wait.

Thanks for the info. You all are soooo wonderful

valentine4mommy wrote: Just out of curiousity myself…

When taking biopsies & looking for eosinophils…isn’t it similar to looking for celiac. Hit or Miss? KWIM? Don’t they have to get the “right” spot?

Also, like Laura mentioned…There’s always intolerances too.

Depending on the above(whether or not the “right” spot is needed for accurate diagnosis)…I would do another SKIN PRICK allergy test. RAST isn’t very reliable & your LO was only about a year(?) when he was skin pricked for allergies? The most accurate time frame for allergy testing(skin) is b/t 18mths-3yo. Something to consider?!

[Anonymous]

Just out of curiousity myself…

When taking biopsies & looking for eosinophils…isn’t it similar to looking for celiac. Hit or Miss? KWIM? Don’t they have to get the “right” spot?

Also, like Laura mentioned…There’s always intolerances too.

Depending on the above(whether or not the “right” spot is needed for accurate diagnosis)…I would do another SKIN PRICK allergy test. RAST isn’t very reliable & your LO was only about a year(?) when he was skin pricked for allergies? The most accurate time frame for allergy testing(skin) is b/t 18mths-3yo. Something to consider?!

[Anonymous]

one of my children is IgA deficient—and his levels are almost non-existent. i doubt that the antibiotics you were on while pregnant had anything to do with his IgA levels. 8 of my 9 children have one of the main genes for celiac disease—but only 3 actually have celiac disease. for some reason, celiacs have a higher incident of IgA deficiency than the regular population.

ian had alot of ear infections when he was little. he seemed to have a cold all the time during the winter as he got older, so i thought he might have allergies. we had him tested and there were no allergies. it wasn’t until we had him tested for celiac that we discovered he was Iga deficient.

from what i have read, some people have a lot of problems with an IgA deficiency, and some have very little problem with it. after ian got older and quit having ear infections, i’d say he hasn’t really had much trouble with it.

hopefully you aren’t dealing with anything too serious and your son won’t have too many problems with his lowered immune system. he has a lot higher level than my son, and i don’t consider him to have much of a problem with it.

[Anonymous]

lori and therese, i think it would be great if you gals started a new post about research instead of just keeping it in your PMs, if you wouldn’t mind. i’d be interested in hearing what you both have to say, and if you title it so that people are aware of what it is about, they can avoid it if they are not interested.

i think i have been reading too many Robin Cook books and have become somewhat interested in medical research—and of course i am interested in medical research since my kids have celiac disease and almost all of us carry the gene for it.

[Anonymous]

my kids have celiac disease—you can always have them check for that, although the tests aren’t as accurate until they are about 3 years old. if you have good insurance, the test doesn’t cost very much. if they decide to do a cope on her make sure they do plenty of biopsies.