This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I'm in San Mateo (about 15 minutes south of San Francisco). Just wanted to give you all an FYI on prpobably the least expensive place to get your gluten free flours and noodles: Ranch 99 Market. I go there for all my noodles (rice, tapioca, bean thread, and sweet potato flours) and I get my tapioca and rice flour there also (rice flour for $.79 versus $4.89 for the same brand at Whole foods). Plus alot of the Malyasian, Thai, Vietnamese, and Singapore style sauces/curries are gluten free (no soy sauce). Of course any Asian market will do, but Ranch 99 has the best prices...plus you can sign up for one of their "membership" cards (like a Safeway Club card) for free and get special discounts. I would have to say my family does about 60-70% of our shopping there and fill in the rest at Trader Joes, Whole Foods, and Molly Stones (they have fab produce!).
I am SO incredibly frustrated right now with one particular skin care company that I may end up screaming. Oh what the heck, I AM going to scream, "AAAAAAAAAARRRRRRRRRRGGGGGGGGGGGHHHHHHHHHHH"! Well, that was mildly cathartic.
So here's the deal. I am the manager at an upscale day spa in the San Francisco Bay Area. We carry three skin care lines and one makeup line in my office. These are both retail and professional lines. The Monday after I was diagnosed I went into work and called the reps for all of the companies we work with. I got an immediate response from the make up rep, and two of the skncare reps got back to me within 24 hours with a list of the products they carried with gluten in them. This was fabulous as not only was I using several of the products for personal care, but I am handling them at work constantly as well (now I wear gloves if I need to work with the glutened products).
The third company HAS STILL NOT ANSWERED MY QUESTION!!!! I have called the rep repeatedly...no response. I have emailed the company...a wishy washy response, but nothing definative. I emailed the head honcho of the company...no response. I mean really, this is just ridiculous! Obviously I am not personally using any of their products anymore, and I am taking precautions when handling them at work, but the frustration has not been alleviated. I am absolutely gobsmacked that a company would not only fail to respond to me as a consumer, but also fail to respond to me as a retail outlet as well. What jerks!
I just wish I could get the owner to drop the line, but at the end of the day she really does not see what the big deal is. Oh well, I will just make do with telling all of you that MD Skincare could really care less about their consumers. Hey...that felt better than the scream!
I have spent the last several days working, taking care of the kids, and helping out with my mother in law who had a mild stroke last Sunday. No jokes about how she is trying to poison me with flour today...it would probably be in poor taste!
On a positive note though, I got a package this morning from my mother (she lives in a different state). In it was a liscense plate frame for my car. I almost peed my pants I was laughing so hard. The top part of the frame says "Seitan" and the bottom part says "is evil". The bottom phrase has on both sides a picture of a sheath of wheat in a red circle with a line through it. The card said, "Say it loud and say it proud...I have Celiac and wheat sucks!" My mother is an absolute HOOT!
Happy Friday to you all and may you have a wonderful weekend!
Ah Tuesday...the day of the week that my husband and kids look forward to the most. Why, you may ask? Easy, it is what my son calls their "Gluten Filled Tuesday". This is the day of the week that the three of them go out and eat whatever they want for dinner and do not have to worry if it is safe for me, or if there is anything on the menu I can eat, and to indulge in the things that we just don't get at home anymore.
For instance, last week it was deep dish pizza. Tonight, it's Chinese. This is the first of their meals out that I actually find myself envying. I LOVE Chinese food, any and all of it. Problem is, if there is a style of cooking that is not condusive to eating gluten free, this would be it. My husband is Chinese and speaks the language fluently, when I was diagnosed he talked to a cook at one of the best resteraunts in the Bay Area. The man flat out told him good luck with eating gluten free Chinese, there's wheat in almost all the noodles and just about every sauce used has soy sauce in it. At least I know and I won't find out the hard way.
So tonight I am making a tofu and spinich scramble. Maybe I'll flavor it with a little gluten free soy sauce!
Let's see, it is 12:30 in the morning and I have to be up and bright eyed and bushy tailed for work tomorrow morning. Why am I up? Because I have stomach cramps that are making me feel like I am about to give birth. Since 7:00 last night. At this point I find myself praying for D...at least then it will get out of my system and the flipping cramps will stop.
Went to dinner at a local Vietnamese resteraunt that is one of the few places I have been able to eat at since my dx. Ordered what I always do...shrimp and lemongrass beef over rice noodles (SO yummy!). The shrimp is coated in rice flour and then grilled. About half way through dinner my husband started telling the kids to hurry up and finish so we could leave. He tells me that he KNOWS I am going to get sick because I was looking a little foggy and being snippy. I thought he was crazy...until the cramps hit. Oh yeah, and the lovely distended belly bloat that caused one lovely elderly lady to ask me (as we were leaving) when I was due (talk about insult to injury).
On our way out, the hubby swung by the kitchen to ask what they cooked the shrimp in tonight. Chef tells him that they used white flour because they were out of rice flour, and he'll see us next week. Oh joy! Next time I'm sticking to the beef and rice noodles.
...I finally signed up here and have spent the last couple of days trying to figure everything out! The information I have recieved from the posts and blogs have been incredible. Thank you for that everyone!
My story, condensed and in a nutshell, is this:
I have had digestive problems for probably 11 years or so. Nothing too serious, just the occasional flair up of what I called my "sensitive stomach". Almost 5 years ago I had an attack that lasted for about 4 months. In that time I lost almost 40 pounds and got to the point where I could not leave my house. Even taking the kids to school and picking them up became a major issue for me. I was a wreck, my husband was a wreck, my children were wrecks. I repeatedly called to make an appointment with my doctor only to be told to take Pepto Bismal (what?). It got to the point where I wouldn't eat anything save for a bowl of Cream of Wheat or oatmeal (plain of course) and an Ensure. Just to keep THAT down, I would take between 8 and 10 Immodium tablets a day.
Finally got a doctor's appointment, and they couldn't figure out what was wrong with me. They gave me a default diagnosis of Colitis, as in: "we cannot figure out what it is, and it LOOKS like Colitis, therefore it must BE Colitis." Great medicine, huh? So I was given a list of foods to avoid (fried, spicy, blah blah blah) and sent on my merry way. The problem was that it never really went away. I would avoid the foods I was supposed to and when I would have a flare up would revert to eating my Cream of Wheat and oatmeal...only to still feel awful.
So we got a new medical plan, and I got a new GI doctor, and after years of misery I got a new and improved diagnosis of Celiac on May 30, 2007. Within the first couple of weeks I have seen a difference in my body. The constant rumblings in my stomach have almost disappeared as have the almost contant trips to the ladies room. Hallelujah!!!
I have still had some problems with bloating and discomfort and went through my food diary to see what I have been eating that would cause it. AAAARGH!!! Say it isn't so...I have been eating cheese, and lots of it...I LOVE cheese, any kind, any way. I have always said I could give up chocolate before I could give up cheese, guess I jinxed myself cause it's the cheese that is going. So now I can add that to my list of things that I just cannot have anymore!
So there's my story...boring, huh? Next one should be a tad more interesting. Intrigue (does the mother in law really not get it, or is she trying to contaminate me purposely?!?)! Bias (my brother loves beer so assumed it will be what I miss the most, thereby leading him on the ultimate gluten free beer taste test!!!)! And bake goods (what's up with all the palm oil people?!?)!
I too have only suffered from a handful of "major" flareups (each lasting several months), other than that I would get the diarrhea (D) a few times a week. Until I went gluten free it never occured to me that it isn't normal to get D that regularly.
The majority of the symptoms that I experienced were always explainable by other things...the migraines (stress), the exhaustion (busy lifestyle), the neuropathy (must just be that bad circulation that runs in the family), the severe anemia (another family trait), the frighteningly low blood pressure (yet another family trait), the funny rash that would appear and disappear (there goes that stress again), the fact that my stomach was constantly gurgling (it's just sensitive).
I think about the only unifying thing between everyone here is that we have Celiac...otherwise I would venture that the ways our disease has shown itself to us is as varied as the personalities here. Please just remember that just because you may not have the most severe of outward symptoms does not mean that you do not have damage where you cannot see it.
All that being said the list of symptoms, that I didn't even know were symptoms, that have disappeared since going gluten-free have boggled my mind. Other than a case of being glutened the D has disappeared as have the: headaches, constant exhaustion, and the gurgling belly. The neuropathy is not nearly as severe as it was before and while I haven't had my blood pressure taken since I was at the doctor's last, I have not "grayed" out when standing up in weeks (would happen all the time before).
Best wishes to you and congratualtions on the newest addition to your family.
breakfast: the regular coffee with rice milk, Erwhon(sp) corn and amaranth puffs w/rice milk and a couple of dried black figs
lunch: grilled chicken salad w/fresh corn and black beans tossed with olive oil and balsamic vinegar
snack: a bowl of blueberries
dinner: baby bokchoy stir fried in sesame/soybean oil and gluten-free tamari sauce, steamed rice, shrimp cooked in Malaysian red curry sauce, and something like 5 glasses of water because the curry was SO spicy (but boy oh boy was it good)
dessert: one cocoa merengue cookie and a glass of Pu-errh tea
Plus the family and I went for a crazy long walk together yesterday on the levee (like over an hour).
Today I will have:
breakfast: 2 Trader Joes gluten-free/dairy free pancakes with blueberries and of course I can;t forget my coffee with rice milk!
lunch: 2 warmed corn tortillas wrapped with roasted turkey and hummus (this really good one from Trader Joes that has cilantro and jalapenos in it...tastes better than it sounds!)
snack: an apple and some medjool dates
dinner: probably some left over rice with the curry sauce and more bokchoy cause I am working late tonight.
Excercise: I did a 45 minute pilates/yoga workout this morning.
Thank you KarenB and GFpaperdoll for the info on the cast iron pans. I have my Gramma's set and have been using them for years. Last night I felt as though I had been glutened but for the life of me I couldn't figure out from where (since I cooked the whole meal myself with known ingredients). I just assumed it was something else going on with my body. I will try reseasoning the pans and see if that helps.
Missmommy, you can also try driniking the high calorie Ensure (I just checked online for an ingredient list and the one posted shows that they are gluten-free, though I would check the label at the store). Definately look into your pre-natal vitamins, and check the labels on everything going into your mouth extra carefully.
Best wishes to you and your family on your impending arrival...meemsy
I never had much of an apetite before I went gluten-free, then again if my stomach was acting up, I would just ignore the hunger pangs. Since I have gone gluten-free I am RAVENOUS...for the first time in years I wake up in the morning and I actually want, no need, to eat breakfast. What I am doing now is eating several small meals throughout the day instead of just the usual three, I find that the hunger is much more under control and I am lessening the feeling of wanting to binge. If you are a vegetarian and cannot eat soy, then definately try and get some protein from eggs or dairy or a gluten-free supplement.
I have seen so many people here who have struggled to get a diagnosis, and I find myself thinking back to all the ridiculous things I have been told by various doctors over the years. Just wondering what the best advice/opinion you recieved from you doctor, and what was the absolute, most God awful thing you have heard?
The best advice I got was just after I got diagnosed. The doctor told me I need to think about gluten as though I have a peanut allergy. He said the effects of ingesting the gluten are not as immediate or dramatic as it would be were it a peanut allergy, but the long term effects are just as deadly. After hearing that, I have not once had the urge to cheat!
The worst thing I was told (and I can laugh about this now, but at the time? Not so funny) came after my fourth or fifth visit to the doctor several years ago. I was rapidly losing weight, I had such bad D that I was practically housebound, I was fatigued, I was having episodes where my feet and hands were going numb on me, my blood pressure was ridiculously low, a whole laundry list of symptoms. I was 29 at the time. I was begging the doctor for a referral to any one in any department who might be able to help me. Her response was that the only referral I was getting was to a psychiatrist because it was obviously all in my head...that I was just too young to be having all the symptoms I was complaining of!
This is my first Friday weigh in. I'm at 155 (up from 146 about 6 weeks ago)....AAAAAARGH!!!
Yesterday I had:
my normal morning coffee with rice milk
one Glutino blueberry breakfast bar and a bowl of rasberries (breakfast)
a roasted turkey and hummus wrap for lunch (I used a Vietnamese rice wrap, SO good and the hubby's idea!)
an apple for a snack
basmati rice with peas, curried lentils, and spinich for dinner
some blueberries and pineapple for dessert
Ummmm...it's 10:40 a.m. and I have only had the coffee so far, but the meal plan is:
two Trader Joes gluten-free pancakes with blueberries for breakfast
going to the beach today, and bringing an apple, carrots, roasted turkey, and some hummus for lunch
probably a bowl of berries at some point (they are so ggod this time of year!)
Husband's cooking dinner tonight and he's making pepper steak, steamed veggies, and a salad
for dessert, he picked up a teeny tiny Crave Bakery gluten-free chocolate cake and some dairy free ice cream
Excercise? I actually got on the treadmill and walked for about 30 minutes this morning and did about 20 minutes of yoga. This is the first time in years I have actually felt energized by excercising instead of needing a nap...I must be doing something right!!!
My mother and I have come to the conclusion that it came from my maternal grandmother's side of the family. She was Irish and Scottish, she had horrible digestive problems her whole life, she had Grave's Disease, she was severely anemic (and iron supplements never worked), she was unable to put weight on until the day they removed her thyroid (and even then, it wasn't much), she had 3 miscarriages, and she died of lymphoma 10 years ago. We also know that her brother died of colon cancer in his fifties, and her mother died young (probably of cancer) as well.
I was diagnosed because of my DH, my mother has just gone in to be tested. My maternal aunts are also being tested. My brother refuses (he says he is healthy and has no symptoms so what's the point?). Mercifully, my children have been tested and came up negative...the doctor says it is more than likely because my husband is full blooded Chinese and this is a rare disease with Asians. Though they are both lactose intolerant (that Asian thing again!).
When I think of the pain and suffering my grandmother went through, when just cutting out the gluten could have made a difference, my heart breaks.
I have been gluten free for a little less than you have. Is it easy? Not by a long shot, but there are things you can do to make it easier on yourself. If I bake now, I bake gluten free only...that way I am not tormented by going through the trouble of making something for my husband and children that I can not have. Arrowhead Mills makes a great gluten free brownie mix, the husband and kids didn't notice the difference.
Certainly there are things I miss dreadfully...like dim sum, but I send the family out for it without me, that way I do not feel left out. If there are any resteraunts that you go to where you are a "regular" I would suggest going in and talking to them about it. I have had a tremendous amount of luck with that, and they have been more than happy to accomodate me.
I do not know where you live, but if there are any Vietnameses or Thai places near you, check them out. Both types of cooking are much more reliant on rice noodles and flour and do not regularly use wheat flour in their cooking or sauces, and both cultures do not use soy sauce either. Also see if there is an Asian market near your home for something different (a big plus on this is that alot of the substitute flours you will be using, like rice and tapioca, are a fraction of the cost there. Plus the noodle choice is outstanding...rice, bean thread, tapioca, and sweet potato noodles are all available, and again cheap.
Try changing your mindset as well (I know, easier said than done). What is "normal" anyways?
I have so far considered this an adventure...and a pleasant one with no headaches or fatigue or stomach problems. I would take that over a piece of Wonderbread any day!
Not only talked to the wedding planner, I talked to the bride too (actually the wedding planner told the bride I had called). Everyone was really good about it, and as it turns out the chef's aunt has celiac, so he is well versed in the food handling and preparation. Not only that, but the bride said she checked to make sure there will be something I can have for dessert also (on top of the gluten thing, I have a casien allergy too). Above and beyond the call of duty for any of them.
Then again, the bride has some pretty expensive things on her registery...maybe she's angling for that nice Tiffany cut crystal vase, hmmmm.