Search Results for 'celiac'

[Anonymous]

With the skin testing – did you get the print out? They should have measured each welt. They do a *test* welt that has nothing in it – let’s say that measures 2-2. They also do a *histamine* welt that everyone will respond to – let’s say that measures 20-15. Now, let’s say they tested her for dairy and it came back 4-4. That is quite a bit less than the 20-15 but it is not down to what the TEST welt was. Let’s say they also tested for soy and that was 5-1. Same thing again. This is what happened with Carson. The allergist said he is not allergic to those things. The number is not where it needs to be for an allergy. BUT, I KNOW that those things bothered him and he said they very well could show up slightly and be intolerances. With intolerances, the immune system does not get involved so it is harder to detect.

That being said, I would ask for the read out and see how the numbers vary on the skin prick testing.

Carson was tested for celiac but our peds gi specialist said that you have to take a biopsy from the intestine to get a true reading on this. ??Just what I was told??

I hope this helps. Let me know if you got the printout from the skin prick testing.

Gotta get LO ready for bed.

[Anonymous]

We had allergy testing done last month. Blood test and skin test. The allergist also does a lot of other stuff to look at with the blood test. different levels of things..ketones and such and celiac tests. I’m not sure of it all, but only one or two things seemed a bit off, but nothing allergy wise. We had my older done early too and she came up positive right away. Maggie came up with nothing. Her main symptom is vomitting, though she will get diarrhea if she gets too much of a food that irritates her. Though, too much never seems like a lot. Our allergist is great, but he doesn’t know much about this- the label just came bc I happened to ask what else could be her issue if it’s not a food allergy (we had a terrible time after having her try rice cereal and then bananas and sweet potatoes) and he remembered talking to another allergist at a conference about protein intolerance. He called the other doctor who is supposed to be the local “expert” and he apparently agrees to the diagnosis. Maggie has a really hard time with bm’s if she doesn’t have a bit of something to help her go-but every med they have given to help has just caused her pain. hence, trying the food to help her not have such hard bm’s. I just didn’t realize it could cause such bad things in one so little.
My kids keep growing, and are big for their age, which is sometimes why people don’t always want to help. And yes, they are close in age. Which is fine. We have Cecilia’s allergies under control. Was just prepared for Maggie to have them too..not something else…
It’s their sleep patterns that I sometimes think will be what kills me! 🙂
We see the allergist again on Tuesday. Should I be seeing another doctor (GI or anything)? Should I have him give me a specific label (FPIES/MFPI)? He thinks it is ok to try her a food at a time, starting with the fruits since those, according to what he has read, are the least offensive. right now she is great with pears and apples. she has thrown up just about every veggie we have tried and oh, i am afraid of what he will say about trying grains. I don’t mind stains in the carpet, just don’t like to her to hurt. Prunes were just awful! She just wants to eat so badly! she starts sucking her lips when she watches us eat. it breaks my heart. esp to think that we are on one meal a day right now and, oh, if we have to cut that out, i think i’ll cry for her. (that we had to for her health and that she will be unhappy to not get it)
Our ped is gov’t (military) so she doesn’t really know anything I don’t tell her. At least they just started carrying the neocate at the clinic for me so I can stop spending a whole paycheck on it. That was a fun 5mths of fighting.
I am just not sure what I am doing. I feel like no one knows specifically what this is or what to tell me to do. Maybe I will just have the allergist spell it all out for me as best he can.
I’ve known that she has had a problem since the beginning. All her symptoms were like Cecilia’s, but worse..and with no outward signs (hives/eczema). I was actually relieved when we were put on neocate. Poor thing slept after being up and not able to eat for four days bc I couldn’t get anything to stay down in her.
I hope this made a bit of sense. I’ve tried to answer as best I can while throwing in a few questions of my own. I will read all the info. I’ve been trying to read what I can find, but it seems to be sparse and non-specific. We just seem to have more vomit than anything else. Even hubby said yesterday that this is just ridiculous that a little one should have to live this. And I fully agree. Just need to figure out what to do…..
Thanks for the quick replies!

[Anonymous]

Thanks for the encouragement everyone. Bensmama- Thanks for the compliment about my name That made me smile. My name drove me nuts for years because I couldn’t shorten it into a nickname when ALL my friends at school had nicknames. Wow, what problems I had back then, huh? Anyway, Kate definately has been feeding for longer periods of time since I started one side per feed which is great. She still fusses a couple of feeds a day and despite watching her and the clock like a hawk to see some sort of pattern,(big sigh), there isn’t any. Sometimes it’s just fussing because the milk is coming to fast, sometimes it’s arching, kicking, and whimpering. Rarely any screaming…sometimes. Now her poop is still just a stain in the diaper and I don’t know what to do. She’s still wetting diapers and you wouldn’t necessarily think anything was amiss except she does sometimes grunt in pain when she poops. ARRRRRG!!! I don’t know! I’ve cut out ALL dairy and soy, I don’t know what else it could be. No new foods. Could it be a sudden wheat allergy? Celiac? This poor kid. I hope she turns out to be well adjusted despite all this drama.

Claire

[Anonymous]

Yes, I believe the symptoms can come and go. I’ve noticed that for myself. Lots of symptoms about 10 years ago. Mild or no symptoms for years, and celiac symptoms that were triggered during my last pregnancy. I’ve heard the IgeneX testing is the one to do for lyme. I do not officially have celiac, but I have severe gluten intollerance (even though I have the lesser of the sensitive genes for gluten sensitivity). I think lyme is probably responsible for activating many of the neuro-degenerative diseases, auto-immune disease, and unlimited other health problems, including cronic ear infections in children.

[Anonymous]

mary—-can the symptoms of lyme wax and wane over the years? i am seeing a neurologist next week and i am going to ask him about lyme—-a number of people on the celiac board have been diagnosed with lyme disease and have told me to ask the doctor to use the IgeneX testing. some of them do not have celiac, but have a definite gluten intolerance. i wonder if it could have been what activated the celiac gene in some people?

[Anonymous]

Fibromyalgia is definately related to lyme. My mother has fibromyalgia. I may have contracted lyme from her, and passed it on to my children (she lives in WI, a state that has high incidence of lyme). I have issues with chronic fatigue, gluten intollerance, IBS, etc……… our whole family is on a gluten free/casein free and dye free diet, and it has helped a lot!!!!

I had numerous flea bites in Missouri after we bought a flea infested house. I had a lot of strange symptoms after that, such as night sweats, dizziness, easy bruising, and a lot of other celiac-type symptoms. I probably already had lyme from my mother, and was re-infected with the flea bites.

MaryK2007-5-18 12:39:14

[Anonymous]

marianna–before we knew how bad sylvia’s reflux, was my mother in law once said, “maybe she’s just spoiled.” when kassie kept complaining of shortness of breath, and i could hear her when she would take deep breaths to try and relieve it, my mother in law said, “do you think that maybe she learned that?” (i’ve had anxiety problems in the past, but that was not one of my symptoms) once we got kassie on prevacid, the shortness of breath went away. she tells kevin that i shouldn’t talk so much about medical things around my kids. she seems to have a real issue with me talking about medical things. medical problems just seem to be most of what has gone on in our life for the last couple of years—besides that, i am a bit of a medical buff, i wanted to be a nurse at one time. what i choose to talk about isn’t a sin, or a “fault”—-it just makes me boring.

after the girls were diagnosed with celiac, she called me to apologize and tell me that she understood me more, now—(but she still has a problem with me talking about medical things—-how i wish i had other exciting things to talk about!!!!

[Anonymous]

Well, we think it was a reaction to some wheat germ I put in his food yesterday to boost his calorie intake. He had a normal bowel movement today, so we’re going to continue with milk and not with wheat germ. Does anyone have a child with celiac disease or gluten intolerance? We are thinking of having our son tested again for it since he is a little older now. He was tested a year ago and it came back negative. germantownmom2007-5-5 11:36:30

[Anonymous]

Hi guys,

Just wanted to post and say that with five weeks under our belts, Lucas is regularly sleeping 8-10 hour stretches. It took until about the third week to really see the wakings consistantly dropping down in frequency. Dh and I even went away for the first time since he was born (this was planned way in advance and was only coincidental that I had begun the new sleep regimen beforehand) and he slept great for my MIL.

So, in hindsight, it seems that once I felt the wakings weren’t all reflux related and once I was ready to teach him to “go” to sleep on his own….presto! (Well, not exactly presto….more like two difficult weeks with losing a LOT of sleep, and another two of steady improvement). Looking back, I think I could have tried this around age two, when he’d been gluten free for several months and was able to sleep four hour stretches much easier. I also weaned him at 2 yrs old and that might have been a great time to just switch EVERYthing around, but I was too chicken to rock the boat that much. I just want Lori and everyone else with severe sleep issues to take this to heart….there IS HOPE OUT THERE!!! Even with hiatal hernias, even with severe protein intolerances or possibly celiac (he tested negative but Christine tells me the tests are unreliable until age 3!), even with a history of never sleeping more than 3-4 hour stretches….even with 2 years of co-sleeping with mommy and nursing on and off all night long, IT IS POSSIBLE TO GET YOUR CHILD TO SLEEP FOR THE NIGHT IN THEIR OWN BED.

Some other issues that came up, Lori: he regressed in other areas which I was told would probably happen. He was going pee on the pottie several times a day, that went out the window. He began crying when I left him at school– which he’d never really done before– and became very clingy especially the first two weeks of this new regimen. The separation anxiety has since stopped, but we are still trying to get comfortable with doing the pottie thing again. The other thing I did was try to get the naps to be as good as possible, so I cancelled a lot of plans and we missed a lot of his pre-school– which is in the afternoons two times a week. It seemed that the better naps he took, the better his nighttime sleep was and I needed the sleep to get maximized during our big shift with everything.

So, we did the whole hold-his-hand-sit-on-the-edge-of-the-bed, and then gradually moved out of the room. It took me nearly four weeks to get my chair on the hallway side of his bedroom door. Now, I tell him that I need to check on teh dog, or do something in teh other room and that I’ll check on him. Sometimes he still wants me to hold his hand — he’ll say “Mama hold my hand a lot” when I ask him if he wants me to hold his hand for a minute– but I’ll just do a minute or so and while he’s still awake leave the room.

Another warning, maybe I’m just some sort of freak, but for the first ten days of sleeping well (normal nighttime long stretches) I was a zombie. It’s like I was sleeping too much or felt like I was in a coma after waking up. I also wondered if my body was physically hoarding the sleep, like feeling tired so that I would sleep as much as possible while the opportunity presented itself. Almost like a survival mechanism? I was so tired and taking naps and sleeping lots of hours at night compared to my last 2.5 years! Now I seem to have come out of that as well.

Let me know if you’ve started anything with Hailey, yet. Does she turn two soon? And to the others in similar shoes….hang in there!!!!

[Anonymous]

anne—i just barely found this post—i don’t know why i missed it—sometimes when i click on “active topics” not all the active topics actually show up—-not sure why.

we have a number of gluten free cookbooks, but we actually use “regular” recipes quite often. we use our gluten free flour blends and add xanthan gum—-and we have alot of success doing this.

bette hagman’s books are really good and she takes other allergies into account so that she will often list the alternative ingredients you can use for milk and egg allergies.

we have 4 of her books: “the gluten free gourmet”, “more from the gluten free gourmet’, “the gluten free gourmet cooks light and healthy”, and “the gluten free gourmet bakes bread”.

some of the other books i like are, “the gluten-free kitchen” by roben ryberg, “incredible edible gluten free food for kids” by sheri l. sanderson, and “gluten free 101” by carol fenster.

we have made some excellent pie crust using bette hagman’s vinegar pastry recipe. there is a good pizza crust recipe in sheri sanderson’s book. roben ryberg has a really good buttermilk bread recipe.

we use bette hagman’s featherlight mix alot for our baking. her four flour bean blend turns out really nice baked products, too, which are probably alot more nutritious—i’m not quite sure why we haven’t used it more???

the info on celiac has really moved forward, so there are a number of things that are now considered safe that in the past were considered off-limits—-buckwheat and millet, for example, used to be questionable. oats used to be considered unsafe—but the current research shows that oats are safe for most celiacs if they are not cross-contaminated.

i’m sorry i didn’t see this sooner!!!

[Anonymous]

Hi Ann – I am a celiac and was diagnosed about 6 years ago. Bette hagman has several great cookbooks. However, being a busy working mom – I shop at Whole Foods and they have lots of gluten free products to choose from. They are also treating my son as a celiac until he is old enough to get the biopsy like his mom. He is on elecare and has GERD. Things are up and down. Some days are better than others and I am still working with the drs to get to the root of his fussiness. Good luck to you!

[Anonymous]

heidi—you seem pretty informed about food intolerances. that is funny that your husband teases you about it—-just like you see so many problems as being caused by food intolerances—-i have a tendency to wonder how many people with problems might actually have celiac disease!!LOL! i guess we all have our “areas” of specialty!LOL!

[Anonymous]

heidi—i am familiar with enterolab—but i don’t trust them. dr. fine has never given any scientific info to back up his testing methods. he has been saying for years that he is going to publish his work soon—but soon just doesn’t seem to get any sooner. it is almost a guarantee that enterolab will diagnose you with a gluten sensitive gene because if you saw all the genes listed that he considers “gluten sensitive” genes, there are very few people that would not have one. but, i have heard alot of people that place alot of stock in enterolab, too.

our family is part of a celiac study being done through the university of california, irvine—they are doing gene testing as part of the test, (which saves me a small fortune) but i haven’t gotten the results. the gal that is running the study said that they do not accept anyone into the study that has been diagnosed by enterolab.

[Anonymous]

If you have a natural food store by you there are Perky-O’s that are gluten free…they are just like cheerios, and also soy/dairy free.

There are rice noodles in the natural foods section of most grocery stores. and of course just rice is good.

Mostly we stick to meat, fruits and veggies with Noah (he’s celiac and on very limited amouts of dairy soy, as he just outgrew his issues with them at 2.5 years)

MrsRobens is a good brand to search out for allergen free bread mixes

Maybe Christine will have more ideas for you…we pretty much make whatever we used to eat and substitute gf dairy free and soy free stuff….or just eat the basics as I stated

We do LOVE to make the namaste pizza crust (dairy/soy/gluten free) and then have a cheese-less pizza with lots of veggies on it!

[Anonymous]

i have also heard that food allegies and intolerances can affect behavior. i sometimes worry that sylvia might have celiac and that that is part of the reason for her difficult behavior. i just can’t bring myself to test her again, yet.