Search Results for 'celiac'

[Anonymous]

Hmmm..interesting info.

[Anonymous]

That is really interesting. I bet you are glad now that you did the study. I guess the goot thing is that now you can be forewarned if any of the other kids start showing any symptoms. It just is very interesting that you all are carriers now…. Might be worth while to have the future spouses tested as well to help with issues in potential grandchildren… THanks for sharing.

[Anonymous]

That is so interesting! Thanks for sharing!

[Anonymous]

i finally saw the results of our families gene testing that was done when we entered the celiac study through the university of californi, irvine.

they didn’t tell me leif and daisy’s results because they are over 18—-i asked her to mail the results to both of them. kevin and i both carry one of the genes and every one of the kids also carry one of the genes. we all have the DQ2 gene which is more common than the DQ8 gene. they believe there are other genes involved as well, but just don’t know which ones they are, yet. 30% of the population carries at least one of the celiac genes, but they don’t know why the disease activates in some people and not others. since all of us carry the gene, i wonder what it was that activated celiac in the girls and not in the rest of us. actually, it could be activated in any one of us at any time. so, i guess we all need blood testing once a year—or sooner if we start to show any symptoms.

[Anonymous]

commercial oats carry too much risk of contamination. a celiac only needs a crumb to set off the autoimmune reaction. guaranteed gluten free oats are the only ones that are safe to use.

[Anonymous]

my girls were diagnosed with celiac 2 years ago—so there is no doubt or guessing for us—-we HAVE to be totally gluten free. we have actually done most of the diet on our own. i have a friend with celiac, so i knew a little about it before my kids were diagnosed, but i used to spend alot of time on a gluten free web site and gained a little more info. my girls used to tell me that they thought i knew more about the celiac diet than my friend who had been diagnosed for 7 or 8 years. bette hagman gives alternate ingredients to use in some of her recipes for people with various allergies besides having celiac disease.

if you ever want to have your child tested to see if celiac disease is actually a real problem for your child, your child will have to be eating gluten, but, at this young of an age, the celiac tests are not particularly accurate. also, sometimes a person with celiac disease will be lactose intolerant for a while because of the damage to the villi. once the damage is healed, the lactose intolerance goes away.

if you really want to go gluten free, you have to read labels VERY carefully. don’t just trust the allergy statement at the bottom of the ingredient list. sometimes if the offending ingredient is already listed in the ingredients, it won’t necessarily be listed in the allergy statement. no wheat, barley, rye, oats, oat flour or malt or malt flavoring. there are guranteed gluten free oats, but they cost a fair amound. we buy them from glutenfreeoats.com, but bob’s red mill is carrying them now, also—rolled and steel cut. there are a number of other places that also sell them.

it may not be the easiest thing to find a dietician who is well versed on celiac disease—-it used to be considered a rare disease, but is now considered to be very common—-the common disease that nobody knows about.

[hellbennt]

this thread should help:

https://www.infantreflux.org/forum/forum_posts.asp?TID=7940&KW=

good info & also the yahoo group that sheri loves

there’s also:

Milk allergy/night wakings/lLoveMySophia: https://www.infantreflux.org/forum/forum_posts.asp?TID=10017&KW=

also: also aloe vera? probiotics?

salacylates & amines? http://www.cs.nsw.gov.au/rpa/allergy/resources/foodintol/salicylates.cfm

Slippery elm?: http://www.ajc.com/health/altmed/shared/health/alt_medicine/ConsHerbs/SlipperyElmch.html

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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, Palemer’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/hellbennt2008-01-20 10:49:05

[Anonymous]

Hi Maggie,

I think soft poos are normal for alimentum.. but not mucousy ones. That def. could be from an intolerance of allergy.

As for the celiac test.. the bloodwork might not rule it out completely. If “kevieb” comes on here.. she might be able to help you more with that.

And as for tripleing her birthweight by a year.. I am not so sure. How much did she weigh when she was born? Shane was 8 and a half pounds and def. DID NOT weigh 25 pounds when he was turning a year. I think he was about 20 pounds and the ped. wasnt too concerned. How much does she weight now??

[Anonymous]

Hi, alimentum moms, i am trying to figure something out and need your help.

dd has reflux and has been on alimentum and prevacid since she was 1 mo old. I have 2x tried to put her on goodstart but it did not work. She was growing wonderfully until she started eating solids, now she has hit a wall. She should have tripled her birthweight by now but has barely doubled it. I have tried solids slowly, 1 at a time to check for allergies but have not found any obvious issues with the food.

She just had bloodwork that ruled out a thyroid problem or celiac disease. They neglected to check for milk allergy and I will have her tested next month at her 1yr appt.

She has never really had solid poops but I was told that is how alimentum babies are. do you think the alimentum is the reason she has very soft mucousy poops or could it be a food allergy? (there is no blood in her poop)

tia,

maggie

[hellbennt]

ERG!!!!

so I wonder if he has celiac?

[Anonymous]

leif went into one of our local surgeons today to have a scope done. he said his impression of her at his appt beforehand was that she wasn’t very friendly. after the scope she told me everything looked fine and she would be back to talk to us.

when she returned she said it looked like he was having bile reflux—this is not something i had heard of before. i had told him to make sure that she biopsied the duodenum because we have celiac in the family. the bile seems to have caused some mild gastritis.

i was looking at her notes which stated, bile reflux, mild gastritis, and she had ruled out celiac disease. she also told him that he didn’t have esophophagitis. i’ve dealt with this stuff for long enough that i know you cannot rule out celiac or esophagitis just by visually looking with a scope—-you have to look at the cells on a microscopic level.

she was telling him that it might be a good idea to keep a journal of what he was eating and when he was getting pain—while she was talking he pointed out to her where the pain was—then she snapped at him and said, “are you liestening to me?” he was obviously still somewhat drugged because he was still sounding a little drunk. i was just furious that she would snap at him like that when he was pointing out where his pain was while she was talking.

she said since she was a surgeon, they will usually run tests and that maybe he should see his general practitioner—-which he has already done. i said, “wouldn’t it be better to see a GI?” she did not respond to me. i repeated the question as she was talking and she still did not respond to me. a little while later she did suggest that it might be a good idea to se a GI specialist.

she told him to stay on the prevacid. i looked up bile reflux when i came home and discovered that PPIs can make bile reflux worse. leif had noticed that after taking the prevacid his stomach was hurting worse.

i am still so mad at her for snapping at him when he was still medicated—she needto learn a little bedside manner—or maybe alot of bedside manner.

i hear she is suposed to be really good at oncology.

[Anonymous]

thank you.

[Anonymous]

I can understand your hesitation about testing, but sometimes it really is the only way to get the right answers. Regarding the barium test, is it a modified barium swallow or an upper GI. They are two different tests with two different purposes. Either way, you’d be surprised, but most babies don’t mind the taste of the barium. My dd also had a very severe feeding aversion and was pretty much on a feeding strike at the time of her upper GI. I was petrified that she wouldn’t drink it, but she sucked it back like she hadn’t eaten for days. As for the endoscopy, I’m a big fan… I asked for one at 6 months old, but b/c we’re in Canada, Hailey didn’t get it done until 15 months old, so she was a bit older. But I think it’s a pretty easy test, and can give a lot of good info. I’m not sure if your dd is on meds for her reflux or not, but if she is, then you might want to talk to your doctor about whether or not she should go off them, and how soon prior. If she’s not on meds, then you can get some really good info about whether or not she may need meds. Either way, you can look for esophagitis or EE or celiac or other good things to know. I don’t know too much about the pH probe b/c we never had it done. I’ve heard that the impedance probe is better and may be something to ask about. Good luck.

[Anonymous]

i just made these this morning with blueberry pie filling.

ingredients:

2 tablespoons shortening

1/4 cup honey

1 egg

1 packet yeast (about 1 tablespoon)

1/2 cup sour cream

1/4 cup potato starch

3/4 cup corn starch

1/4 tsp baking soda

1 tsp baking powder

1 tspoon xanthan gum

1/2 tsp salt

1/2 tsp vinegar

for cheese topping:

3 ounces cream cheese, room temperature

5 tablespoons powdered sugar

for fruit topping we like to use canned pie filling—our favorite so far has been lemon. we have also used blueberry and apple.

combine all ingredients (except the cheese and powdered sugar. mix well to remove all lumps.

place approx 1/4 cup of dough in a small oval on greased baking sheet. flatten to 1/4 inch. repeat until all dough is used. it helps to dip your spoon in water to do this.

mix cream cheese and sugar. place a spoonful of cheese mixture on top of each danish and a spoonful of fruit pie filling on top of the cheese filling. bake at 350 degrees for approx. 15 minutes.

the recipe makes abaout 6 large danish.

these things end up huge, but the bread is really light and airy. these turn out so good.

[Anonymous]

kevieb wrote:

if i forget to get the danish recipe posted for you—-please remind me—-my memory is kind of bad.

Did you post it yet?