3 Years gluten-free....or So I Thought!

[kdonov2]

Sigh.

I went gluten and dairy free in 2009 and learned a lot about how and what to avoid. For a long while, I mainly ate fruit and I felt much better and my stomach finally shrunk to reveal a flat, normal looking one rather than the horribly bloated, pregnant looking gut I thought of as pure, fat that I was never able to rid myself of no matter how much exercise before gluten-free life. I was content with my healing stomach and decided that it might be okay to try other foods. I became more lax in the questions I asked at restaurants and with the chances I took. I assumed I knew all there was to know and thought I was a pro at avoiding gluten containing foods. My stomach began to swell again to it's former massive size and once again, I became very self conscious and thought that there was some other medical problem causing this. Only recently did I discuss this with my naturopath who said it was more than likely that I had small encounters with gluten and didn't realize it. She was right, I looked into some of the items I had chosen to assume were safe, and sure enough, they were not. I am pretty upset with myself that I gambled with my health and am to blame for this horrible, ugly belly that I have tried the greater part of my life to destroy, and it was completely NOT worth it. What sucks also is that I thought I was doing well. I felt that I was pretty obsessive over what I would consume, but I now see that it was not enough. I cannot believe that not only was I miserable thinking I was/had to be so restrictive those years and was actually hurting, but now I feel like I have to go back and relearn everything. It is sad that I won't be enjoying my ethnic cuisine restaurants anymore. My family and friends already thought I was a burden when I got to choose where and where not to eat as well as taking what I thought were "safer risks" at restaurants. This is going to be so hard. I have to go through this process again, and now actually do it properly. I really hope I did not set myself back 7 years of healing during accidental glutenings.

[GlutenFreeManna]

Do be too hard on yourself. It's never to late to learn more ways to eat safely! I've been doing this for 18 months now and I still learn new things everyday on this board. Do you care to share what mistakes you made to help other people who are new to eating gluten-free? I'm guessing they are things most people won't think to check when they are just starting out. You could turn your mistakes into a positive by using them to help others not do the same thing.

ETA: I doubt very much that you set yourself back 7 years. Did you have any follow up tests to see if your antibodies were high again or to check for villi damage? You could always request repeat bloodwork to find out how bad your cc level was. You can't really judge how much damage you've done to your body just based on your symptoms.

[ravenwoodglass]

All you can do is go on from here. You can't change the past but you can and will be able to correct the mistakes you made going forward. Hopefully soon that nice flat tummy will be back and you will overall be feeling much better. While your family may see this as a bit of an inconvience it would be much more inconvient to have to help you deal with some of the problems that could have developed while you were still unknowingly glutening yourself. This isn't an easy lifestyle, although things are getting easier as more demand for gluten-free food is becoming common. I live in a small rather rural city and I found not long ago that if I put the words gluten free, restaurants and my location in a search engine that many more options came up than I thought existed. You could try this and see if you may have more choices than you now know of.

[HS7474]

So, this has made me feel really guilty because I'm pretty sure I am an exact mirror of your situation. I'm still having my gassy symptoms but I blame it on my addiction to chewing gum, regardless of the fact that it's not always consistant. I'm nearly 3 years in as well and have definitely become lax. I'm sorry that things have taken such a turn for you but thank you so much for posting. I think you've definitely helped me make up my mind to be more strict with my diets. I am not nearly as cautious as I should. May I ask - what foods did you discover weren't safe that you thought were?

[sreese68]

Would you please share the pitfalls you've discovered? I'm new at this, so your experiences could potentially help me avoid them. Thanks!!

[Skylark]

I did that too. I kept getting into gluten at Thai restaurants without realizing it and thinking I got "food poisoned". Duh. Now I know that an awful lot of American Thai food is made with soy sauce or oyster sauce. I was eating out too much and not worrying about CC enough. I was also eating Amy's pizza regularly and I learned here that it tends to be CC more often than one would hope. I wasn't careful enough at sushi bars. Now I mostly eat sashimi and rice to avoid getting odd bits of fake crab meat or tempura I wasn't expecting in rolls. I was also picking apart the sandwiches that are served once a week at work, eating the meat and lettuce from the middle and throwing away the bread. I was checking for crumbs but it was still stupid. So was eating at Subway. I would eat things friends told me were gluten-free without checking the label myself. That got me twice. One friend was well-intentioned but one didn't understand what gluten was. The other friend has a gluten-free wife but the mochi balls he served and thought were gluten-free had changed ingredients since he checked. He got us both.

Now I have a bunch of thyroid autoimmunity.

[kdonov2]

Thanks for everyone's comments. As for the pitfalls, one of the main ones was hard liquor. I am in college and it is not out of place. However, I believed most distilled liquors were safe, but I realize that I need to be extra careful because I usually have silent symptoms and wouldn't be able to tell if I hurt myself most of the time. Some people say triple distilled alcohols are gluten free even if they are distilled from gluten grains, I am not a believer in this. I discovered many of the drinks I was having were gluten, like Belvedere vodka which is from Rye (switched to potato) and whiskey. I also love sushi and never thought there was wheat starch in wasabi, but now bring my own. Plus, I found out that some Japanese mayo's (spicy mayo sauce) have malt in them. I asked to see the package at a local sushi house, sure enough, it was unsafe and I had been all too happily chowing down on it. Spicy tekka and taco are my favorites. Hmmm...what else, I stopped asking important questions at ethnic restaurants and just hoped for the best, just told myself it would make no sense for any of my food to contain gluten or be CCed. Yesterday, I decided I will not eat at a place where it might be hard to communicate with the staff/chef.

[sandsurfgirl]

Oh my gosh, the fact that you are a college student and doing gluten free to the point you have is incredible! Be so proud of yourself.

Now this is your next step. Don't give it all up but make compromises. Find a few go to drinks that you can have and make sure you have them at parties. Keep a stash if you need to.

Take the time to call restaurant managers and talk to them when they aren't busy, maybe in the afternoon. Find one or two items from each restaurant you can eat and make notes. Then you will have your go to restaurants too. I have a few places where I always order the same thing that I know is safe and I never get glutened.

Never assume. You'd be surprised at what things are put in foods. There are quite a few Mexican places that put soy sauce in their marinades. I would never equate soy sauce with Mexican food. One place puts their carne asada in the enchilada sauce that is thickened with flour.

I assumed i couldn't have any sauces at a french restaurant but when I called they said all their sauces are reduced and none of them contain gluten!

So do your research. Do not wait until you are at the restaurant to ask questions unless it's an emergency.

When you are at a restaurant, use the word ALLERGY. Celiac, intolerance, gluten, blah blah mean nothing to them. Allergy scares them and makes them take it seriously. They think of people dying from peanut allergy and stuff like that.

Often the manager will know what gluten is becuase they've taken food safety classes. If they don't, then explain it to them and remind them about ingredients like soy sauce and beer in marinades.

There aren't very many restaurants that cant' accomodate you with something if you call ahead and ask. You may not get to eat what you want exactly but you can experience eating out with friends.

[Chiana]

Some people say triple distilled alcohols are gluten free even if they are distilled from gluten grains, I am not a believer in this. I discovered many of the drinks I was having were gluten, like Belvedere vodka which is from Rye (switched to potato) and whiskey.

If it's truly triple-distilled and no additional ingredients are added back in, it should be safe, though it may give you the heeby-jeebies to drink it. (I avoid it whenever possible, just on the grounds of possible CC.) The problem is that companies add things back in, either as additional flavorings (Think flavored vodkas) or as per the nature of the drink. If it's not clear, but a brown or golden color, it's possible some of the original mash was added back in, which some companies do for certain alcohols. If I can't get a straight answer off of a reliable website or from the manufacturer, I simply do not drink it. I hate that alcoholic beverages don't have to have a list of ingredients/nutrition facts. I think it's overdue for a change.