Your comment about the pizza is exactly what I meant! The people who declare its safe to just scrape it off, wipe it off, eat around it....They have no clue and if they are doing that are obviously still damaging their body. They are not clean. That is what I meant about the people who claim it is so easy. Thank you for putting it into words better than I did!
I read on here daily, but am not the wealth of information most of you are, so I rarely post, however I know this is one place my vent will be understood. So....
People who don't really get how difficult it is to stay gluten free drive me up a wall! "Well, just don't eat bread!" says an aunt, who I know means well, but just doesn't understand. The common person, who doesn't have to deal with it, truly has no clue how many places it truly is, and how careful you have to be.
The co-worker who says, when the 10th plate of Christmas cookies was brought into the office, "well, you can eat those ones, or how about that kind?" No. No I can't. Leave it alone, you don't get it, and please do not eat your cookies at my desk! Grr....
What I find even more frustrating though, is people who claim they are gluten-free and say it is so easy. Those people are obviously not completely clean, because I see people on these boards daily who are doing everything right and still get glutened somehow. "Just eat plain meat and vegetables! It's not tough!" Yeah, and not very appealing either.
There, vent over. Thanks for listening, and understanding!
Yes! That is my biggest complaint! I don't really miss the bread in my meals, but I rarely feel full. Every now and then, I tell my husband I want a steak, baked potato and a vegetable (with a side salad mind you!) just to feel full. That seems to be the only meal that does it for me. Otherwise, I don't feel full, I just quit eating when I am sick of it. (lost 12 lbs. though, so its not always bad....)
1. Sex: Male or Female Female
2. Age: 35
3. How long ago were you diagnosed with celiac disease? 1 year
4. Does anyone in your family have celiac disease? No
5. How severe is your celiac disease? Severe enough that I avoid gluten like the plague.
6. Is it difficult to eat out at restaurants or anywhere outside of your home? Yes, and usually not worth the effort. I could make a $12 salad at home...for a lot less and know it is safe!
7. Do you believe that there should be more to be done to make this disease more aware to the public? Yes.
8. How has this disease impacted your life? Because of going gluten free I eat healthier, and have incorporated vegetables into my diet that I never even thought of trying before. However, it makes social gatherings (90% of the time they revolve around food and drinks) next to impossible. People don't get it and tend to accuse you of not being able to relax and "just grab a plate". Or make comments about watching my weight when I order salad or just choose not to order at all.
9. What do you think would make celiac disease easier to deal with? Clearer labels on food ingredients. A lot of things say at the bottom of the ingredient list "contains...." and list high allergens. But so many things do not. It would be nice if it was a quick check on the back of a product.
I am so frustrated right now I could scream. I was glutened this past weekend, and I can not figure out where. The first sign that hits me is my skin, it gets red and itchy, and from there the joint aches, brain fog, etc. continues on....So I know that's what the problem is, and I can not figure it out. I have been racking my brain for 2 days trying to track it down. I thought it was antibiotics I was on for a sinus infection, but googling it proved me wrong. I have no clue from here. I will gladly avoid all of the things I used to enjoy if it will keep me healthy, but when things are so hidden...Ugh! It is so frustrating!
I find that I get paranoid too. DH is working out of town for the summer, and I don't usually think twice about being home alone with the kids, but after being glutened, I jump at every little noise, and lay in bed at night with my heart pounding. I also have no control over my emotions. Last Sunday, after being accidently glutened the day before, I completely wigged out on my poor kids, and had to honestly lock myself in the bathroom in an attempt to control myself and gather my thoughts. DH can come home from out of town and spend 10 minutes with me and ask "What have you eaten?" because it is so obvious.
The last real gluten free meal that I remember enjoying was a pizza with everything on it from my favorite local pizza joint, with a side order of onion rings.
However, I say remember because....one night I was having a particularly bad day, was really pissy about a lack of choices in my personal menus and went out with my hubby for a couple of drinks. Well, probably one (+) bottle of wine later, he is driving my pathetic butt home, and I evidently insisted on drive thru. (Think, "I don't care, I am eating what I want!" Ugh!) Well, one 'frisco burger and order of curly fries later, that I don't even remember eating, I wound up miserable for days. What stupidity! And DH has promised he will never bring me through drive thru again at 2:30 am, no matter how hungry I claim to be...
I crave a pizza too, and every now and then I think about a chicken sandwich from Burger King, why I don't know. But I agree with the comment that what I miss most is the options. I miss being able to order anything I want, wherever I want and not think twice about it. I miss the options more than anything.
I certainly don't know the medical reasons for it either, but I kind of assumed that the whole grain sort of acted as a filler. For me that was usually pasta or bread, and that is filling. Much more so than an apple. I can honestly say, since I have gone gluten-free about a year ago, I have not felt that feeling of, oh I am so stuffed. You are not alone, I know that for sure!
I practically live on Honey and Almond Rice Chex. It is easy, quick, and even if I wasn't gluten free I would still love it. Unfortunately it doesn't stick with you all that long, so I always have to bring a snack for the 10:00 hour...yogurt, string cheese, or more Rice Chex to just munch on without milk.
I went to an Ear, Nose and Throat specialist for almost this exact problem. I always had sinus issues, a lot of drainage, etc., however would notice the feeling that my throat was closing up on me and a lot of the same symptoms that you explained. My doc referred me to an Ear, Nose and Throat specialist, and he declared I had food allergies. The test was a simple blood draw and took two minutes tops. He had a dietician sit with me and discuss what foods I eat most regularly, and went over common allergens with me to help decide which foods to test for. I believe that 10 foods were included in the cost of the testing and anything more than that was added expense. About a week later the dietician called me back and I met with her to go over the results. It was no big deal, and now that I am gluten free my sinuses are clear and I no longer feel like I can't breath. There are many other symptoms that are now gone as well, however gluten definetly affects my breathing.
That doc told me that airborne allergens are tested for with the pin pricks in the skin and food allergens are a simple blood test. To anyone out there, is this correct info? I don't know that for fact, however my blood draw showed wheat to be an issue, and since cutting out all gluten I have never felt better.
and I have to ask, does anyone just not care about food anymore? I honestly couldn't care less what I eat, it is simply something that I have to do to stop from starving. The foods that I enjoyed are all off limits, and so far the gluten-free breads and buns that I have tried have been awful.
I have only been gluten-free for a little under a year, and I feel so much better, have so much more energy and my quality of life is improved so much that there is no way I will break my resolve, however eating has simply become a pain in the butt. I hate having to figure it out, lunches stink (I am going to turn into a head of lettuce pretty quick)and I just don't care anymore. I eat only because I have to and there is no meal that I actually look forward to anymore. Something as simple as "running to grab something" is out of the question, and I just don't care.
Does anyone else out there eat only because you have to in order to stay alive? Or do I need a therapist? :-)