I Thought I Was Gluten-Free, But Apparently Not. Ugh!

[Pixeleen]

Hello, everybody. This is my first post, and I admit I'm at a bit of a loss. This might get long, and so I thank in advance anyone who finishes this post.

I've never been officially diagnosed with celiac disease. They did a blood test a year ago or so, but that was negative. Now of course I know that means almost nothing. I would get horrible episodes of abdominal pain. Anyway, I went wheat-free for a while, which alleviated some of my symptoms. But I didn't stick with it, and so after a time the problems returned. So this spring, I finally went gluten-free, and have felt MUCH better since, lost a bunch of weight, don't always feel tight and bloated. Great, right?

Problem is, the biggest and most obvious problem when I do get glutened is, I swell up. I bloat and look pregnant, my clothes don't fit, it's very uncomfortable...you know what I mean. I've tried to be pretty careful. And in the past week, I've been hit at least twice, once on Christmas Eve (WHY was there wheat in shrimp cocktail sauce??) I'm bloated, my clothes don't fit, I feel like crap.

And now I'm finding out that a lot I guess I just stupidly assumed would be safe (Starbucks drinks, for one...frappuchinos) isn't. I (foolishly) had a Subway salad brought home for me by a well-meaning family member who thought it'd be safe since they changed their gloves. I was just so hungry and fed up. I KNOW that was dumb. This isn't usual for me by a long shot.

Food and I don't get along, and never have. As a child, I thought I was overweight (when in reality I was actually very, very slender, though I had a healthy appetite and ate well), and later developed an eating disorder. While it's largely under control, I still don't have a healthy relationship with food. And frankly, the celiac (or what I suspect it to be) makes that worse. I HAVE to be hyper-vigilant and check all my food, I HAVE to think about it. If I don't, not only do I get sick, but I also don't fit my clothes and start to feel "fat" again and uncomfortable in my body. I know this is a dysfunction, but it's exacerbated by the celiac.

So: I've been consuming gluten in what I thought (somehow) was safe; I've not nearly been as careful about CC as I should be (out of ignorance); I'm also highly allergic to eggs, which knocks out quite a few gluten-free alternatives; and all the worry about food and eating is reinforcing an eating disorder. I'm FINALLY learning all the details I should have before (being way more careful about drinks, cooking pans, sheets, utensils) and I'm quite frustrated again. I thought I was over the adjustment angst, but now it's rearing its ugly head again. UGH. I'm sorry for the rant, really. I just feel so irritated with this, and gross!! Any advice/tips/help anyone can give me?

[Metoo]

Me too! I am/tired frustrated too. But what motivates me is that in the last 2 weeks I was glutened twice..the first made a thousand blisters on my hand and is still painful 2 weeks later...the second caused me to have diahrea all Christmas Eve! I have to figure this out and make sure I have no gluten to try and get my skin to heal up! It awful!

For me...I too was venturing out of the labeled gluten-free foods...but clearly I was not ready for that step...so I am back to ONLY eating/drinking things that say gluten free. Stinks and its expensive but I need to be gluten free...entirely gluten free my hand is killing me!

I am not diagnosed either...which I think mentally makes it harder to stay gluten free...I 'guess' luckily I am reacting much more severe now which makes me want to stay gluten free.

[GFinDC]

First off, welcome to the board!

You are not stupid for assuming things are gluten-free. The problem is that food processers use gluten in many many products as a thickener or emusifier. Think gravy made with wheat flour, it gets nice and thick. Gluten can do the same thing in salad dressings, ice cream or other products. So gluten gets used in many products for that reason, products you wouldn't think of having wheat in them. Then there's barley, which gets used as malt to enhance flavors. So you really have to check labels every time to avoid it or just not eat products that are processed. It is safer starting out to stick with whole foods and cook them yourself.

There are products that are safe, but you still need to check them before consuming. People can change their recipe or process or suppliers without you knowing, and that can lead to problems if you don't check. Kraft labels their products if they have gluten, so some companies get it.

A little obsession with checking labels at first can go a long way to keeping you safe. Most meats and veggies and fruits should be safe but the should be washed before cooking or eating. Still check labels on meats as they are not always safe.

Mission corn tortillas are safe. They are made on dedicated lines with no gluten ingredients. There are safe products lists on this site and other you can check. Or google the item name and gluten.

It can take some time to adjust to the gluten-free diet, but it is worth it when you start feeling better.

[curlyfries]

The more you can stick to simple and naturally gluten-free foods.....meat, fish, veggies, etc., the less label reading necessary.Stay away from processed foods for awhile, except the ones you are already comfortable with. Then venture out and try something new occassionally that may require some investigating. Hopefully this will eliminate some of your stress, so you don't feel so overwhelmed.

Personally, I eat very simply......don't have to bother with finding specialty gluten-free foods (except chebe mixes )It is much healthier and safer (and cheaper), but I realize not everyone is willing to take that step

[kareng]

Pix, Honey, I'm going to say the unpopular and hard comment. I just want to make sure you give it real careful consideration. I am not discounting that it may be Celiac but I want you to be sure.

Are you sure that this bloating that is making you feel fat is real? Not part of the eating disorder? Do others see it? Is there someone you can ask to help you be sure you are not just " feeling bloated" because you ate food that your eating disorder believes makes you fat?

I only ask because I have a couple of friends with severe eating disorders and I want you to be well. I don't care if you have Celiac or gluten intolerance or not, I want you to be healthy and happy and able to co- exist with food.

[cassP]

Pixeleen: i havent noticed the "swelling/bloating" when i get accidentally glutened... just even more pain & intestinal bloating and bowel issues than i do with fructose, excess dairy, and excess grains..

before i went gluten free- yes, the wheat would put weight on me like crazy

i DO notice the "feeling fat" and that my clothes are suffocating me- even my bra-> when im having a bad thyroid day or part of the day or am undermedicated... do u have thyroid disease?? have u been fully checked? anyone with gluten intolerance/celiac should be screened for thyroid disease and vise/versa

technically REGULAR (*NOT LIGHT) frappucinos are gluten free- there's a small chance of cross contamination, but they've never bothered me. its your personal preference on how u react or what u trust. i can no longer drink any drinks with the pumpkin syrup-> i assume its part of my fructose malabsorption. **also the Java Chips contain wheat flour!!!!

i empathize with u on the food not aggreeing with u... i have digestive issues with so many additional foods besides gluten.. sometimes excess fructose gives me more pain than a glutening... sometimes i can ONLY tell that ive been glutened by an itch where ive had DH, or by my BM the next day because so many other things cause me a lot of pain/bloating.

good luck to u... and get your thyroid checked- it also affects your digestion BIG TIME