Joined Nov 2005
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Forum Thread
The Celiac discussion thread....no wheat allowed!!
February 4, 2009 at
08:46 PM
in
Sad
Celiac....I haz it!
This sucks really freaking bad.
Anyone else in the same boat? I literally found out an hour ago...have lots of researching to do.
This sucks really freaking bad.
Anyone else in the same boat? I literally found out an hour ago...have lots of researching to do.
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FYI, Trader Joes and Whole Foods have tons of gluten free products. WF tends to be pricy though.
FYI, Trader Joes and Whole Foods have tons of gluten free products. WF tends to be pricy though.
I'm most worried about not being able to drink beer
I had a friend with Celiac and by the time he was finally diagnosed, he had done serious, irreversible damage to his digestive track. He only lived a few more years after being diagnosed and died at the age of 43.
I had a friend with Celiac and by the time he was finally diagnosed, he had done serious, irreversible damage to his digestive track. He only lived a few more years after being diagnosed and died at the age of 43.
i agree...
the silver lining to having a diagnosis - is that one has an opportunity to eat more healthfully than prior to a diagnosis - a change that may prove to actually extend your life!
education point: the basic short list of gluten items is BROW - barley/rye/oats/wheat
Very cool...let me know!
I missed this thread months ago, but my son has celiac disease.
I make most of his food special for him.
I can give you our "bread machine" recipe if you want. It's pretty good.
Also, in general, I get rice flour at a Chineese grocery store, and put Xanthum gum in with it. Xanthum gum is expensive, but a little goes a long way.. like about 1/2 teaspoon per cup of rice flour.. it kind of depends. I put extra eggs in my son's food when subsituting flour on a recipe.. A lot of it is trial and error.
If you have any questions, let me know.. And yes, I make him homemade pizza too. No reason to not have normal food.. you can make just about anything gluten free.. it's just some extra work.. BTW, my other kids will eat GF food too. I don't give it to them all the time, but it proves it doesn't taste horrible.
I want to add to the discussion.. if you are a celiac, you should not "cheat" at all. The damage done to your intestines gives you a high risk for cancer and other problems. Eating gluten does serious damage to your insides.
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FYI, Trader Joes and Whole Foods have tons of gluten free products. WF tends to be pricy though.
The problem is avoiding soups, noodles/pasta, bread, fried foods with batter , baked dough, soy sauce, beer, gravy, etc. Its amazing how many things have gluten in it.
However you can get grilled meats without a batter covering and eat chicken and rice soup or other soups without noodles. Then theres the gluten free version of the above but they cost a fortune and taste kind of weird. Theres gluten free soysauce etc. Im looking for various rice noodles too.
The funny thing is I first heard of celiac disease after desperately trying to find an alternative to chemo for sky high platelets for someone I know but I now think theres a good chance I might have it. One of my big complaints was always a touchy digestive system and the last 7-8 years -- horrible symptoms. Pain so severe -- several types of pain, it was torture chamber levels of pain, unbearable levels. I started thinking I might be in the last stages of some cancer.
The big problem where Im at is there seems to be very few doctors who are up on things. They remind me of some docs in some small towns who tend to know the basics they learned decades ago. Also as Ive posted --- Im flabbergasted. Ive heard that cliche over and over again and just heard it again on NPR in a discussion on the health care policy, that doctors overtest, overtreat patients to make more money. I have yet to see that even once. Ive been to tons of doctors the last 8 months and all I see over and over again , is pure stonewalling. They seem incredibly reluctant , hostile about doing anything.
They seem to embody that cliche --- "Take two aspirins and call me in two weeks....". They seem to want to do nothing all the time or just follow a simple text book procedure and they dont want to listen to your problems or details to try to puzzle things out. Its an assembly line process and they seem extremely pressured to get you out within 10 min and on to the next patient.
When I see those docs in Mystery Diagnosis or House ---- I laugh. In no way are they like that, trying to figure out your problem overnight , tortured by your problems. Its absolutely shockingly lame --- Ive had to go to multiple docs of the same type and push like crazy to get anything done every step of the way. And its like people say, if you dont know better, you would just take the first docs advice and sit on your butt and suffer maybe the rest of your life or die very soon and you wouldnt know anything was improperly done, that you got incredibly shoddy treatment. You might even think the doc was excellent and the people helping you were excellent and the persons death a random act of nature rather than a result of total stupidity.
.
Anyway after going to a meeting with others who had it, yes there is an organization you can join who meet regularly and discuss things, we found out that you can get it at any time in your life. It can sit dormant (like a disease in remission) and then you can have some kind of trauma happen and it will emerge. One person had cancer someone else had a surgery and these people were definitely at least middle age, and were fine before they got sick.
Luckily for my son he was misdiagnosed and after a year they started him slowly on gluten again. We don't know why, to this day, that all his villi in his small intestine were destroyed, but about 3 years after his first diagnosis the doctor decided to do another endoscopy and check his intestines again and all the villi grew back. So maybe it was just a temporary thing in his case. If I was you I would confirm every so often that you do still have it. I know there is a simple bood test that might confirm it. My son was hospitalized because he was vomiting for 3 weeks straight and had every test you could imagine. Everything seemed to confirm celiac. Had you been sick before all your issues? If so maybe you need to be on the diet just long enough to heal you body? Not sure if what happened to my son is common or not but he seems to be doing fine now. Definietly stick to the diet, malabsorbtion is not good and you will definietly get sicker if you don't eat what you should.
Not sure if you watch the view but Elizabeth is also celiac, I'm sure she probably has a website somewhere about it.
Good luck, I hope you start feeling better once on the diet.
I've only seen 3-4, so I am curious now...
I've only seen 3-4, so I am curious now...
Things changed a lot for me when I found out I had celiac, but in a short matter of time everything went back to being close to normal.
Eating at home is the easy part. My wife cooks all the time using the GF flour and she always tries new things. At first it's a PAIN IN THE ASS and everything tastes completely different, but slowly with a lot of trial and error things are getting better and better and better. I know she has some cooking secrets and flour that she likes better than others, but I have no idea what it is. I know she loves the CHEAP (like $1 or something) rice flour from the chinese stores. She also loves the pankacke mix that's sold in the see-through plastic bag (not the box). Xanathan gum is also good, though expensive. Bread crumbs are also very useful for cooking (once we found them
WF is expensive as shit, but they have a ton of stuff. We usually try out something in wholefoods and then buy it online for cheap. Amazon sells a TON of GF stuff in large packages making the price fairly nice (as long as you have room to store like 100 granola bars per purchase
Giant started to sell a LOT of GF things (much cheaper than whole foods). Pretzels, flour, candy, bars, soup, cooking stuff, etc. etc. etc. and it's MUCH cheaper than whole foods (smaller selection though). So we buy a lot of GF stuff from there. A lot of other supermarkets are starting to have small GF sections as well. Roche Brothers in MA (I think it's a local store?) is awesome, everytime we're up there I buy a ton of GF stuff that I can't find here in the DC area.
Bread machines, we're tried several and all the recipes sucked. We just gave up on them.
Most of the GF bread tastes worse than cardboard. The only one I like is the prarie bread (whole foods brand), after it's toasted it actually tastes pretty good. If you used to like the soft whole wheat bread (I never did), an alternative in the GF world (the only other decent tasting bread) is the light tapioca bread. This is probably the only GF bread that you can eat without toasting it first and you wont feel like you're chewing cardboard.
Beer? I know of 3-4 brands (I've tried 3, the one I like the most is red bridge -- as my friend said -- it's bitter and hoppy and not bad for a GF beer, but again I have no idea since I only drink beer on the occasional camping trip
Going out -- a LOT of places now have GF menu's either online or even in store (Uno, Outback, Subway for lunch (high chance of cross contamination), PF Changs, Carraba's, any higher end place can accommodate). Uno even has GF pizza now in their regular menu (found out a few weeks ago). The places that don't have GF menu's are usually the pain in the ass places who don't know what GF is anyways, and I just order a steak and hope for the best
There are a ton of websites which I use to check products that I buy and am not sure if they are GF or not, I typically just google the name and put in "gluten free" at the end, and find out from other people who have already called the company to find out. A lot of the scary ingredients like "modified food starch" or "vinegar" or "caramel" turn out to be OK (and if it's not OK, my wife just eats them
Umn... that's all I can think of off the top of my head, if anyone has any other questions feel free to IM me or post here and I'll try to reply
If you go on a Royal Caribbean cruise, they do a good job of providing gluten-free food. That's about all I know about the subject.
NCL didn't do that for us, but I told them each time I went that I was allergic to this and this and that, and they better do a damn good job preparing my food
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