
lilu
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by lilu
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ARCHIVED Genetic Testing: Positive For Celiac ... Now What?
lilu replied to BrooklynFamily's topic in Parents, Friends and Loved Ones of Celiacs
Hi there. I would definitely call your doctor back and ask that they send you a copy of both of your test result reports. Once you have the results in hand, you can post them here on the forum and get some help with interpretation. Because both you and your husband each carry at least one high-risk gene, that does mean that your daughter is at increased... -
ARCHIVED Help! In The Purgatory That Is Pre-Diagnosis
lilu replied to torian's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
My DH has the same symptoms as yours. When we got his bloodwork back, he was negative for antibodies, but his genetic test showed he is at a very high risk (DQ2/DQ2). Based on this information and his family history on both sides of autoimmune diseases and GI problems, we decided to try gluten-free anyway, with very positive results so far. False negatives... -
I agree with Takala that you should contact the Costco store manager and report the incident. While I believe the "sample lady" was probably just ignorant about the disease (Most samplers are employed through temp services, and are not actual employees of or trained by stores), the store management should be vigilant in ensuring that any sample offered as...
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ARCHIVED "glutened"? "contaminated"? What Do You Call It?
lilu replied to melikamaui's topic in Coping with Celiac Disease
Ar our house, we say that food got contaminated. When talking about our internal experience ingesting contaminated food, we say glutened. -
ARCHIVED Trying To Figure Out Family History
lilu replied to guy220d's topic in Parents, Friends and Loved Ones of Celiacs
Also, be sure you get a test that show both the alpha and beta alleles (like Prometheus). The reason this is important is that while most people express as two whole genes: DQ_/ DQ_, you can actually have "hybrid" genes (ok, tried to explain here in layman's terms, but can't quite get it out). Do a search on DQ 2.5 "trans" and you'll see what I mean. The... -
And we can all bring him goodies from the gluten-free world!
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It was with GREAT RELIEF that after a search for gluten-free ingredients, we found this family favorite is already gluten free! Yay!!!!! I can't take credit for this recipe, but I can't give credit either, because I had it at a dinner party 25+ years ago and can't remember the hostess' name! The ingredients sound gross, but trust me on this, it...
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First off, big hugs! I am so sorry you've hit a wall. One of the best resources I've found is glutenfreecookingschool.com, run by Mary Frances. Many of her recipes (including that for flour mixture) include substitutions to exclude corn. I also highly recommend Jules Shephard's "The First Year" which is great and helpful book that literally walks...
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ARCHIVED Should We Test Our gluten-free Son? Please Read...
lilu replied to Seeking-Answers's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
That's a tough one for sure. I have to agree with Sylvia, though. Putting a label to something is not nearly as important, in my opinion, as staying well is. You know through your personal experience what gluten does to your child. The longer you're on the forum, the more stories you will see about inaccurate diagnoses. And what happens if the tests come... -
ARCHIVED Newly Diagnosed...just A Little Support?
lilu replied to SpiderD's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Did other people find that their symptoms remained the same for a few weeks, or do you get different symptoms after coming off the wheat? It seems everyone has a different experience after going gluten-free. Many people feel better and just keep feeling better, but most have ups and downs, And for some it can take a long time to really feel batter. ... -
ARCHIVED A Ramble, And A Few Questions
lilu replied to NeilK's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Neil, I've been doing a LOT of reading and from what I've read... ...if it is celiac, it is lifelong. There just is not much info on non-celiac gluten intolerance, but my bet would be that it is lifelong as well. ...distilled grain alcohols, such as whiskey, gin, etc "hard liquor" is supposedly safe as the gluten in destroyed in the distillation process... -
ARCHIVED Your Personal Celiac/gluten Intolerance Story
lilu replied to emcmaster's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Wow, suziQ, your story made me realize a lot of other indicators in MY life. I too was a skinny kid, all the way to college. I too ate anything anytime... I can still remember lunches of two big macs and fries, or having dinner at home and then going to a friend's house and eating there too, and still being rail thin. I also started my periods late, I was... -
ARCHIVED Your Personal Celiac/gluten Intolerance Story
lilu replied to emcmaster's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
So, here's our tale in brief. Hubby - family history: father died of DM1 related heart disease, mother died of colon cancer, aunt has Chron's disease, paternal grandmother died of colon cancer. Personal history: underweight baby (5 lbs full term birth), skinny adult (46 and still wears 32 pants), about 20 years ago developed sinus problems and what appeared... -
Just thought you might be interested in this. I was just searching my Kindle for cookbooks and saw 'The Kosher Celiac: a Passover Cookbook' :-)
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ARCHIVED Cooking For Non Celiac's
lilu replied to james-12's topic in Parents, Friends and Loved Ones of Celiacs
Is there a particular reason you feel compelled to cook them glutenny food? -
ARCHIVED Lost And Confused And Sad
lilu replied to marie33's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
It's gonna be ok. When my DH went gluten-free he felt great for a few days, then super crappy for a day or two, then better again... There are ups and downs during healing. I'm no expert, but my personal theory is that part of healing is detoxing, the body letting go of stored poisons and garbage. On those days where your system decides to throw out a load... -
ARCHIVED Awesome Bread Machine!
lilu replied to MrsNewman's topic in Gluten-Free Recipes & Cooking Tips
Sylvia- sorry if you've posted this elsewhere, but have you come up with your own flour blend? Will you share, if so? -
ARCHIVED Testing For Celiac
lilu replied to Fairy Dancer's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I am in the load-up now too, and I find pop tarts and pasta are "working" best for me... I use that term lightly because I still feel like crap eating it, but at least I don't toss it. -
My hubby is another peppermint tea drinker. It doesn't make everything better, but it does sooth the worst of the symptoms, relaxes him, and allows him enough comfort to rest.
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you might want to double check that kosher thing by heading to a kosher market or the kosher section of your grocery for a field trip. To the best of my knowledge there are plenty of kosher foods that contain gluten. I know I've seen multiple recipes posted for gluten-free Matso. I would not trust what someone else tells you with respect to ingredients...
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ARCHIVED What Would You Do?
lilu replied to lilu's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Thanks to everyone for your responses. Cait - do you maintain 100% gluten-free? How long have you been gluten-free? I think I'm hust worried that w/o a diagnosis he won't take the diet seriously enough... I know, his body, his choices, his responsibility... Just seems it would be harder to hold onto over the years without a supporting diagnosis... -
ARCHIVED New Here, Our Story
lilu replied to lilu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
HA HA HA!!! Glad to know someone else married to an intestinal Dennis the menace! -
ARCHIVED New.. From California And New England :)
lilu replied to Jess-Ay's topic in Introduce Yourself / Share Stuff
Hey there! So cal here... I was just thinking, why not whip yourself up some old fashioned chex mix? I checked the recipe online, and you'd need to do a couple substitutions, but nothing too drastic (no wheat chex, but more rice & corn chex... gluten-free pretzels or sub in some gluten-free crackers, etc), also, you want to make sure you buy a brand of... -
ARCHIVED New Member From Washington, Hi!
lilu replied to KuKuKaChoo52's topic in Introduce Yourself / Share Stuff
Hey Nolan! I'm in Los Angeles now, moved here from Redmond about a year ago, and missing Seattle VERY MUCH!!! When you go out, do you ask for the gluten-free menu? That might help (though certainly no guarantees! I know it's sacrilege up there, but you could try outback steakhouse. They have a pretty good gluten-free selection, just keep the bread away from... -
ARCHIVED gluten-free In The Inland Empire, Southern California
lilu replied to trustyourguts's topic in Introduce Yourself / Share Stuff
Hi, Sara and Beth! We're in Agoura Hills (other side of the SF valley). DH is the affected family member, but I'm the cook, so Here I am. We're just starting our gluten-free adventure, only been on the diet for a few weeks. So far I've found that sticking to "home cooking" or as Sylvia has called it in many of her posts "whole food" cooking, is both a) the...