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
Hang in there! I've been gluten free for a year and 3 months. It feels normal now. But the first year is really hard.
You might be intolerant to more than just gluten. Do you have problems with corn as well?
I am now off of gluten, dairy (although, I can have a little bit of it--a gluten free piece of pizza once a month), eggs, nightshades (this one is very hard for me), soy, and now... cane sugar!! I'm using honey and agave instead of cane sugar. Massive difference in my energy levels after going off cane sugar--and if you think of it, cane sugar is like a grass/grain type of plant. From what you are saying, I wonder if you are going to end up heading down that path and finding that more foods upset your stomach (not just gluten).
It took a long time and lots of elimination diets--but I wake up in the morning feeling well and happy now. I haven't woken up in the morning feeling well in my entire life until now. It's worth it.
The most annoying thing is "why does food have to be so complicated?" I have found foods that I love to eat (it was like a part time job re-learning to cook and bake), so for me, I'm not heart broken about the food. I'm just frustrated that food has to be so complicated. Every restaurant, every holiday, every family gathering, every time I take communion at church... it's like... I can never get away from it!
I remember the "gooey" disasters!
Buckwheat (I grind my own because got glutened with contaminated preground buckwheat) is great for breads and pancakes--Sylvia showed me a great bread recipe back when I had none! Thanks, Sylvia!!
For a lot of things like cupcakes or muffins, I use 1 cup rice flour, 1/2 cup ground almonds (or almond flour, same thing), 1/2 cup tapioca starch and then a teaspoon or so of xanthan gum. The ground almonds seem to give it that "fluffy" texture, out with the gooey!! But I try to be sparing with the almonds because they are expensive, so that is why I mix them with rice and tapioca flours.
I also have been adding in 1/2 cup ground walnuts to a lot of things because I have cholesterol issues and fat around the belly (walnut oil is said to combat these things)--and I love what it does to banana bread or blueberry muffins etc. But I don't like chunks of walnuts in stuff, I grind mine up in a coffee grinder (that is not used for coffee beans).
Also, I really like arrowroot for a lot of things like focaccia bread or thickening a sauce. It's just my preference though.
I started off with mixes too when I went gluten free... and then I gradually started experimenting to do things from scratch. Good luck!!
Oh my gosh!! Your story is almost identical to mine. It's been a whole year, and I still get tears in my eyes thinking of going to the ER over and over, going through ALL those tests you mentioned, being on IV and morphine... terrifying. And all the while, nibbling on crackers and pretzels, which I thought people who are nauseated are supposed to eat!! And then... to discover that I've been unknowingly poisoning myself with gluten all these years. I'm still trying to come to terms with it. Give yourself time, I'm telling myself that advice. I don't know when I'll ever be "over it" but one day, maybe I won't think about it so much.
A lot of people who are celiac or gluten intolerant have other intolerances too. Have you tried testing for other things or tried an elimination diet? I have now eliminated soy, dairy, eggs, and some nightshades out of my diet (at least for the time being... don't know if I can reintroduce them). Now I have discovered that white sugar and high fructose corn syrup makes me super fatigued, even a teaspoon in my coffee just whacks my energy levels (about an hour or two after eating it). So I'm switching to honey and molasses for everything for the time being--I know they are still "sugars" and high in calories, but they don't fatigue me so badly.
Really, it has taken me this long to really truly accept that a whole food, clean food diet is the way to go--and artificial flavors, dyes, genetically modified foods (like wheat!) and refined sugars are the devil. Like you said--controlling what goes into your family's mouths.
Both of my boys can't have gluten either (and one is casein and egg intolerant). It was pretty hard (we cried together!), but after a year, I can see that they have a pretty healthy relationship with food. It's like their mindset about food has changed. They insist on eating chicken or carrots for snack--I had no idea how often (in my gluten eating days) I whipped out crackers or some other packaged food snack where the box promised "wholesome goodness" but was just jacked up on sugar and gluten. It's like they listen to their bodies for what they want to eat, and I NEVER did that ever before going gluten free because gluten so messed with my body and mind that I was just reaching for whatever refined snack would give me enough energy to make it through the next task. It's hard work. My mother said to me, "It's like you're Little House on the Prairie!!" what with making so much from scratch and grinding my own buckwheat etc. Totally worth it though. Totally worth it!
Someone on this forum (can't remember who) told me to get a thermos (the brand Thermos is what I got)--like a soup thermos. What a lifesaver!! I heat up some leftovers over the stove (today's was grilled chicken and home fries/potatoes), stick it in the thermos--it stays hot! My son LOVES it. This forum is the best for advice!!
As for snacks, lately I have been a little lazy and have grab some packaged things like little bags of crazins or gluten-free nut/fruit bar. But, most of the time, it's some carrots with a little container of dip or some grapes or whatever thing that will not go mushy.
I totally feel your struggle. I've been off gluten for a year now, and I'm still struggling like, "So... I've been unknowingly POISONING myself for 30 years???? How different my childhood would have been... how sad that I was so sickly..." I don't know how long before I can just let it go.
If I were you, I would really consider having a long extended talk with the family about making your kitchen gluten free. It's like... go out with grandma on Friday for pizza, but at home, we can't have this stuff around... It made life way easier on me when my whole household was gluten free, then I didn't have to worry about absentmindedly poisoning myself with gluten or accidentally cross contaminating my food. It's an adjustment on the family. It's an idea.
I am sorry to hear about your friend. Even though her antibodies came back normal, she could try going gluten free to see if it helps. Has she visited a tropical or humid climate or lived somewhere like that? Tropical sprue has the same symptoms as celiac but is not caused by gluten. It's when an overgrowth of bacteria wrecks your intestines, basically. It often happens when a person has lived or visited humid climates and eaten a lot of hawker food. I am not sure how they treat it, but I think antibiotics and stay off sugar and yeast and foods that cause bacteria to grow rapidly. I wonder if a stool sample would show if there is a gross overgrowth of bacteria.
I hope your friend does not give up and will keep pounding the pavement until she finds an answer. That's so tough.
So sorry to hear that you are going through that! Many people complain of back pain during recovery. Also, soy gives me a lot of pain in my joints--just make sure you don't have other food sensitivities.
If you use the search space up to the right, you can get so much useful information--everything from people's favorite gluten free food brands to what people do to help them sort out problems. I bake with coconut milk instead of dairy milk--it works great. A lot of people have posted suggestions for how to navigate a gluten and dairy free diet.
I know that it took me a few months before I started feeling a huge difference in my health. It might take a while to really recover. There are a lot of discouraging moments in the beginning, but it's worth it.
I have a grill. Season some meat and put in the fridge in the morning... later on, slap it on the grill... make a quick mushroom/wine sauce or whatever... add a grilled vegetable... super easy, you don't heat up your kitchen, and there are minimal dishes. We grill a lot of salmon and chicken.
Having a good soup thermos (thermos brand works great) is so key. I pack left overs from supper--the one I bought even has a spoon that is attached to the lid. You can put spaghetti, chicken, soup.... it keeps it hot. My kid LOVES it.
Yes, I just had my gallbladder out. I read some literature (medical) that said there was a link between food sensitivities and gallbladder. So it's not just gluten--it could be dairy sensitivity or whatever. It totally makes sense. You have trouble digesting certain foods, your body starts to form gallstones... I mean, doesn't that sound logical??
For some people, it is caused by food sensitivity to whatever food. For others, it's a cholesterol problem that caused it. It's different for different people--that is the gist of what I got from the article.
It may happen that she will have to get off the cafeteria meal plan and make her own meals. You have to consider cross contamination--are they washing their pans or boiling a fresh pot of water before making the gluten free food? If you boil your gluten free pasta in the same water you just boiled wheat pasta... that's no good. If your daughter stops eating at the cafeteria, I would recommend that you and your daughter spend some time in the kitchen getting some basic recipes down that are easy and can be made on the go or frozen in containers to whip out. Many wonderful people have posted recipes on this web site, and I found a few others on Adventures of a Gluten Free Mom blog. Just go to the search window up above and type in "buckwheat pancakes" or whatever you are looking for--people have posted their favorite recipes. You might be sending her a lot of care packages!!
I live overseas as well. You need to find someone who lives in Zimbabwe who could tell you what is available. Rice flour? Tapioca starch? Xanthan gum? If you can't get many ready-made foods, you may need to consider hiring someone to help you prepare food or wash dishes--I am wondering if hiring a cook or maid is inexpensive there. Do you have someone in London who could send you packages? I have people who send me gluten free oatmeal, pasta etc.
I would recommend that you buy or bring a grill with you, if you are okay with eating meat. We do that a lot. We just grill chicken or fish and add a salad--and it doesn't heat up a kitchen either.
I had very few complications. Everyone is different. I can actually eat MORE things now that my gallbladder is out (I was completely off corn, and now I can eat it again). Some people, it's different; a person I know can't have anything with onions or green peppers now that her gallbladder is out, someone else I know can't eat desserts with cream. I do have a little trouble with real fatty foods like a really greasy hamburger... but I don't really eat that sort of thing anyway. For me, it must have been that my gallbladder wasn't really working hardly at all because my body had adjusted and my liver was picking up the slack because I didn't have any of those issues--I actually just felt a TON better to not have to live with an infected gallbladder all the time.
However, I have heard of cases where people go on a gluten free diet, and their gallbladder recovers. Mine was too far gone for that, but you know, every case is different.
I do not need medicine or anything. I am right as rain after a couple of weeks after surgery. However, I know a person who has had to take an enzyme every day now that her gallbladder is out--I think everyone is different. I was scared about having surgery, but if you have a reputable general surgeon, it's very low risk. You just have to lay around for a couple days and don't lift anything heavy for about 2 weeks.