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Katsby

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  1. Ok let me be quick about my situation. A few months ago I was told to go on a Gluten Free diet for life. The thing is they don't really know what's wrong with me.

    * I have had two celiac blood tests. One before gluten-free and one 9 months after gluten free (for a baseline in case I had to do a challenge). Both were in the same range of 12 with (0-19) as normal.

    * I had an endoscopy that showed mucosal flattening of my entire duodenum, but the biopsies showed no villi damage. Even the Dr. wrote that celiac disease was suspected, but later found out that wasn't the case.

    * I had a genetic test by my GI to look for DQ2 and DQ8. I was told I did not have celiac after the testing.

    * I was told there was no possible way I could have Celiac Disease which is good.

    SYMPTOMS:

    * flushed, headaches, dizzy, dazed and kind of in a "coma", eczema on my hands, severe GI problems (chronic D, color change and fat in stool (I know gross), gas, bloating, very loud rumblings and noises, extreme pain on my left side where small intestines are (it feels like someone is flossing intestines with barbed wire), some swelling, etc. This all happens within a few minutes of ingesting gluten or wheat products.

    My symptoms are why the Dr. found it so hard to believe that I didn't have celiac disease, plus I went through two GIs in the last year during all this testing.

    I have been gluten free for one year and immediately within 2 days of stopping the diet my symptoms completely cleared up. My eczema hasn't been back, the headache, D and bloating, everything. Poof all gone. I even lost 40 lbs quickly that I had put on when all this started.

    The thing is they don't know why. They can't tell me why I have mucosal flattening or why gluten affects me so badly. I have cried in my Drs office asking what exactly is wrong with me. I'd just like an answer. I've been given IBS drugs, but they never helped. I've also been given antibiotics to rule out bacterial overgrowths. I've had a colonoscopy to rule everything else out.

    The Dr. told me I probably have an allergy to gluten like some people have to peanuts and that I should stay on the diet for life and that he doesn't think it's just in my head. He did tell me there were people out there doing research on those like me, but that didn't really make me feel better.

    I feel so fed up like I'm wasting his time. I have thought about going to see an allergist, but I just feel so crazy. Does a non celiac gluten allergy even exist? I was sent to a dietician who kind of specializes in seeing celiac patients, but she couldn't offer me anything I hadn't already researched myself. I asked her if she had ever seen anyone like me before and she said only one other in 15 years, but that it didn't mean it didn't exist. That made me kind of feel a little crazier. I have been gluten free for a year now and thriving without symptoms as long as I don't eat any gluten (I am so sensitive I can barely eat anywhere but my house). My life has definately been impacted and everyone around me is very supportive, but I just want to know. I feel like nothing will change with the diet, but it's a piece of mind I think. Everywhere on the net I try to look up gluten allergy I just find celiac disease or gluten intolerance. I just feel like they know something real is wrong with me, but they just don't know what it is. I didn't really think it was just gluten intolerance since I figured he would have said that if it were.

    Can anyone offer any insight?


  2. I have classic celiac symptoms, but negative tests. I've had bloodtest, endo, and gene test. I get sick from gluten immediately (like within minutes I get brain fog, pain, gas, rumbling, and D, and nausea). I know it could be just gluten intolerance, but why would my duodenum be damaged (mucosal flattening but villi are ok). Has anyone ever heard of something like this? I'm so confused by what could be causing it. Could an allergy damage your intestines?


  3. I know the restaurants in my area that have gluten free menus, but I don't really actually like eating at those place (PFChangs, Outback, etc). It seems that the restaurants I do enjoy don't really care about celiac disease. Or nearly everything on the menu has some sort of gluten in it. Then the only thing I can eat is a salad and even that's questionable because I don't know about the salad dressing. So then I get asked to go out for coffee, but I don't drink coffee. Then I think well maybe I can get a hot chocolate, but then I get paranoid and wonder about the hot chocolate. I haven't been able to eat at any of the holiday parties at work either because of cross contamination, and I am told to live a little or cheat for a day. I really can't do that, though. If I eat any gluten I am sick for at least five days.

    I do my best to eat before I go out, and I don't like Larabars or things like that, so I feel stuck. I just want a normal life where I can go out and have fun with friends. I want to socialize, but I feel like I can't do anything. Ya of course I can do things other than eat, but I enjoy going shopping with friends, to a movie, and lunch or something to that affect. I try my best, despite this diet, to continue my life the way it was before I went gluten free. It's hard :(

    This is the only thing about this diet I really have issues with. I feel stuck, and the worst part is I haven't even begun trying to date. I am not going to do anything to jeopardize my health, but I am also afraid of others knowing just how anal I am about food. My brain is always wondering, is that safe (about food)?

    P.S. before I went gluten free my best friend and I used to cook at his house and whatnot, but honestly I know he's too scared to do that with me now. We can cook at my house, but I think honestly I want to get out of my house and go out into the world.

    How do you guys handle this? Do you just not eat out at all or what?


  4. Good luck with the gluten free diet. I hope your partner responds well to it. My tests for celiac also came back negative, but I have had great results with the diet. After a few days my gastro symptoms and weakness disappeared. I was full of energy. I felt better than ever. Everyone is different though. It did take me a long time to get rid of other symptoms, but the big symptoms went away immediately on the gluten free diet.

    I hope everything works out


  5. I don't think you should eat gluten again if you know it makes you very sick, but that's a choice you have to make for yourself. I would still get the biopsies and other tests done to rule out anything else. I had an endo/colonoscopy the same day and it didn't hurt. I don't even remember having the actual test. I was pretty out of it. I don't remember my throat being sore after, but I kind of just slept the rest of the day. Good luck.


  6. I don't think I have as many splurges as I used to, plus as a single mom with 1 income I need to budget. Most of my money goes to organic veggies and chicken. I buy seafood too. We don't eat red meat, so I don't worry about that. I do a lot of baking so I end up spending a lot on vanilla that I like. I also use coconut oil, but not as often as I used to. I wish I could buy everything I wanted lol, but sometimes I just need to compromise like well do I really need this? It's kind of hard really.


  7. My house is 50/50. It's just my kids and I. I sometimes make them glutened foods (sandwiches for lunch). I use separate areas to make their food. I have separate jars for mayo, peanut butter, etc clearly marked. They are still small so I make their food and I'm aware of what I'm doing. I wash my hands a lot and keep all of my work spaces clean. I put a glass cutting board specifically for them under their food when I prepare it. I can see the potential for cc, but I am very careful. I react immediately. I find I have a harder time with glutened foods that have been prepared in the pots/pans/cooking utensils. I get pretty sick from that so I keep two sets of pots, including one that has never had gluten in it. We don't share a toaster and they don't use the microwave. So far so good.


  8. I've been baking gluten free cupcakes and I really want a homemade from scratch frosting recipe. The problem is I tried the kind that asks for shortening, vanilla, confectioner's sugar, etc. It just has a fake taste to me. I really have been trying not to eat dairy so it kind of limits what I can put in it (ie: butter). Does anyone know of a frosting recipe that is both tasty and dairy-free and also not premade or from a mix?


  9. Mine does it too, on a regular basis (I'm not gluten free - yet). My family members say things like "the aliens are talking again" or "are you hungry already?" (just depends on who it is).

    The most horrifying incident was when I was in a staff meeting, and my boss finished talking about one subject, and was in that dead silence before beginning the next subject........"grblglgrlrohl" (or something like that). Thankfully it was right before lunch and I was able to play it off - but it wasn't because I was hungry!

    I feel for ya too!

    It always happens at the worst time doesn't it?


  10. I know a lady who asked me when I told her I could no longer eat wheat:

    "Can you eat white bread?"

    Me: "No."

    Them: "What? It has wheat in it?"

    I think honestly some people think wheat is only in "whole wheat" products. I don't expect people to know what gluten is. Heck I didn't know what it was. Still I was kind of stunned silent when she asked me this about basic bread.


  11. Here is a tip:

    Make sure everything you put in your baking recipe is at room temperature. Leave the eggs and milk out till they are room temp. Because if you put the oil in with "Cold" ingredients, it will clump up and not mix smoothly. Then when you bake, those little clumps melt and you get little oil pockets (most of it seeps out).

    Thanks for the tip. :) I bought some today. I picked up Spectram's so hopefully I can do some baking experiments this weekend.


  12. I gained weight when my gluten intolerance started. I went from being most of my life a rather skinny girl to a pretty chunky girl lol in a matter of months. It was really bizarre because I wasn't eating anything different and I wasn't eating more often. I seriously thought my metabolism had just slowed down. As soon as I went gluten free I lost a lot of the weight I had put on. It just melted off once I stopped eating gluten. I am pretty happy because I hope I can look like my old self within the next six months or so.


  13. The one way I always know I've been glutened is when the sound of small animals trying to claw their way out of my gut start. Seriously it is really loud. It's always accompanied with a lot of pain too besides the ever annoying gas, bloating, and D. I am pretty good about not ingesting accidental gluten. I check all my labels, but recently I was accidentally glutened by cc and it's the first time since the beginning (about 3 months ago) I've been glutened.

    The problem is that this noise is really hard to deal with on top of everything else. Other people can hear it. People ask me if I'm hungry. How do you guys deal with this if you do get glutened? Do you just wait it out? is there something you take for it? I haven't found a gas pill that will really take it away. It usually lasts a few days. I tried a probiotic yesterday thinking maybe somehow it would help, but no it didn't.

    I hope I don't get glutened again. I am pretty careful. I guess I am just stuck with this for the next few days :(


  14. I was at a chipotle this past weekend and asked the manager for an allergen list. They have a card that lists out what items have gluten. They recommend NOT getting the chicken because of the marinade. I was happy to find out that their rice, veggies, black beans and chips did not contain gluten.

    http://www.chipotle.com/Chipotle_Allergen_Card.pdf

    I got this off their website. I always read the chicken was safe. Maybe the restaurant at your city uses a different marinade per the bottom warning. That's interesting. Maybe I should ask my restaurant.