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Nackie added a topic in Celiac Disease - Coping With4 Years Gluten FreeHi all! (Warning: LONG!)
I have been reading and lurking in this forum for so long, that I thought it was time to step out of the shadows and become an active member. I didn't see a forum explicity for new members, so posting here. If I'm wrong, please shove me into the right forum!
In June I will have been gluten free for 4 years. Seems like a lot longer, so that I can't even image purposely eating it. A little of my history: I have had bulimia since I was 15 (I'm 35 now), that I went to a clinic for 10 years ago. Since then, it has been vastly better, but not totally gone. I'm pretty good with the purging, but the bingeing has been a big deal, off and on, since then. I have also had unexplained water retention in my lower legs, ankles and feet. An orthopedist (!!) strongly encouraged me to see a GI about this. I unfortunately didn't take his advice, the swelling got worse and worse. I gained weight during those years due to bingeing, and in that time I "grew" a huge belly. It started right under my breasts and went beneath my hipbones. But because I was gaining weight, I just thought I was an "apple" and gained it all in my stomach. Add that to the water retention and I was pretty ballooned up!
I worked a very stressful job as an event manager running huge international conferences, along with having a child with ADD and many (!) problems in school. The stress got so bad that I actually fainted during a client presentation, had a sort of epileptic seizure where even though I was unconscious, they couldn't get me off my chair onto the floor. I had stopped breathing for more than 2 minutes before I came to. I was sent to ICU for 3 days, but other than an very high heartbeat, they couldn't find anything wrong with me. A half a year after that, I had to have my gallbladder removed, after a really nasty round (been having gallbladder pain since about 10 years old). They found 13 stones, lots of sludge, and the liver was infected.
Eventually I found I couldn't handle the stress in my job anymore, I was having axiety attacks with every client conversation, long-lasting panic attacks before and during events and due to my schedule no time to recover between events. I spent more time in airports, planes and hotels during that time than with my family. In 2006 I decided I couldn't take it anymore and quit my job.
I had done a low-carb diet from 1999-2002 and knew that I felt best on it. Looking back in retrospect, it was the reduction of gluten that made me feel so good. I remember telling my mom she should try it, because "it gets rid of that awful bloated feeling after you eat, you know?" Well, she didn't know, she doesn't have that feeling after eating. The only time I felt really crappy was when I started baking with gluten as a flour substitue. I couldn't manage to eat the stuff, it just tasted AWFUL to me, same with soy flour. Anything that had these two ingredients just did not sit well with me and my body and taste buds reacted immediately to it.
This got me thinking that maybe it was the wheat (didn't really know about gluten back then), and I started restricting my wheat intake. But buns on the weekend for breakfast are tradition in my home, and noodles once a week couldn't hurt, right? So I didn't start feeling better, really. But I noticed when I went days without wheat/gluten, the water retention in my legs would go down, a little bit. That spurned me on to see what could be the problem, which is how I came across celiac/gluten free diets.
I went strictly gluten free in June 2007 and haven't looked back since. I'm am very sure that I get lots of CC because my household is not gluten-free. Since I was not diagnosed (my doctor said to me "if you feel better not eating gluten, that is test enough for me!") I don't get taken too seriously in issues of CC, but I have i.e. my own butter, my own toaster etc. Things like jam, honey or pb only get used with clean spoons. But if they cut fresh bread, they will leave me to clean up the crumb mess (it has gotten to the point that crumbs actually "turn my stomach"). So, still working on that point, but hubby tries to read labels if he brings me home anything ("you can eat this, it doesn't say gluten in the ingredient list!") They try, but it is my responsibility to decide what I do or do not put in my mouth.
Anyways, since then I have developed corn intolerance (which I put down to having eaten almost only corn-based products after going gluten-free. OVERLOAD!), and soy intolerance which almost seems WORSE than gluten to me. Thankfully I am in Europe and am not subject to quite as much soy as you guys in the US are. But it is still in everything, like chocolate, ice cream, etc. Soybean oil is not a big worry, though, as it doesn't get used quite so much here.
I got glutened last weekend, twice. We had two different celebrations to go to, and each time I called the restaurant before hand to find out if I could eat anything. The first one was a gourmet restaurant with a Michelin star. I ordered "porkloin on wok vegetables", ordered it with no soysauce, no sauce at all. The chef personally came out to ask if he should use his own sauce on it "made only with bones, vegetables, etc, absolutely glutenfree", so I was like, fantastic, great! When they brought my meal my porkloin sat upon a bed of NOODLES with vegetables. Sent that back to the kitchen, and they brought me a new plate with just vegetables and porkloin, but I have the suspicion that they used soysauce on the veggies and recycled my porkloin. I was in pain before we left the restaurant.
The second restaurant my host had actually confirmed with that I needed to eat gluten free, and that I can eat everything and would get a special main course. When the appetizer came, I asked the waitress "you are sure this is gluten free?" and she was like "glutamate? we don't use glutamate..". So I was like, no, FLOUR, wheat, etc...and she was like, no, there is no wheat on it (it was an antipasti plate, so I figured ok). Then she brought out a cream of vegetable soup, and again I said, is this GLUTEN FREE, no flour no binders? No, everything from scratch, no binding agent (had potato in the soup), so I ate that and immediately blew up. I asked to talk to the chef, and he came out and said they use normal bouillon cubes, not made from scratch. I was SO angry! I of course didn't touch the rest of the meal, but I didn't want to make a huge fuss because it was a relative's 70th birthday and there were 40 people there.
So this week I am dealing with depression, MASSIVE bingeing (always worst when glutened), and a rash on my chin. That will take weeks to get rid of. It also makes me very antisocial and so unmotivated (depressed and not able to move). So I've been reading and reading in here which always makes me feel better. I often feel like a freak because of this. It's nice that there are others out there going through the same thing (well not nice, but misery loves company lol)
So sorry for the long post, I just meant to write a few lines and it kept coming and coming!!
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