Post # 1
So about a month ago I was diagnosed with Celiac disease. I was having no GI symptoms, just chronic hives of my lips, hands, and feet. Some doc randomly ordered a Celiac blood test and it came back positive. Endomysial IgA was positive, and TTG IgA was 12… for anyone who knows what that means. I’m having a really hard time with the diet. And I still get the hives without a daily antihistamine. So either I’m doing something wrong or the hives are caused by something else (I though Celiac wasn’t really an “allergy” anyhow). My main problem is eating out. I try to order some standard meat + veggie thing, but then it comes out seasoned with who knows what. I’ve never been into cooking, so I’m clueless on ingredients. And I hate being one of “those people” who harrases the servers (I used to be a waitress) about every particle that’s in the food. Ugh! In some ways I like that the gluten free fad diet is popular because is gives some options at the grocery store, but it seems that people at restaurants just think you’re trying to give them a hard time. Celiac bees, what do you eat when you go out?
Post # 2
It gets easier! You’ll get a lot better at learning what you can or can’t have. My main advice is read the ingredients on EVERYTHING, gluten gets in all sorts of foods you wouldn’t expect to find it in and annoyingly varies between different brands of the same thing so keep checking until you’ve learnt. There will be days where it’s so frustrating and you end up walking round for hours to find somewhere that does lunch that isn’t just sandwiches or pasta but there are also times when you go in to a cafe that unexpectedly does Girlfriend cake and it’s awesome AND because you spend so long not being allowed stuff you HAVE to order the cake! In terms of restaurants its a complete pain and I always feel awkward but you probably have to just get used to asking. Also gpogle Girlfriend restaurants/ones with Girlfriend options, there’s a lot more than you’d think and some are really good!
Sorry of this wasn’t helpful 🙁
Post # 3
I am not celiac, but my grandmother, great aunt are and my younger brother was very recently diagnosed. It was a bigger adjustment for my grandmother and great aunt because they were much older at the time of diagnosis. My brother is only 13, so he has embraced it whole heartedly.
Two books I’d recommend you buy are Gluten Free For Dummies & Gluten Free Cooking For Dummies. Both of those books will help you big time and they even give you tips on eating out (even an idea of what you should say to the server) They even detail the kinds of foods you should avoid.
Please don’t feel bad for harassing the server. You deserve to know if the meal you are ordering is safe to eat. If the servers are giving you a hard time, just get up and leave. You didn’t ask to have this issue and they shouldn’t be rude to you about it.
Grocery stores are not offering a lot more gluten free options than they did when my grandmother was first diagnosed 10 years ago. Yes it involves checking labels almost obsessively, but once you get used to it, it becomes second nature to you.
You can handle this. Promise!
Post # 4
Here, the only way to be considered diagnosed for tax purposes is via a biopsy. You need to keep eating gluten for the biopsy to be accurate.
Post # 5
AB Bride: Well I live in the US and no one gives a smelly fart about my medical conditions when it comes to taxes, lol. I declined a biopsy. It’s actually pretty common to have a negative blood test, but a positive biopsy. But not vice versa. A lot of people don’t produce the antibody that turns up positive in a blood test, so that test is prone to false negatives, but positive is positive 99% of the time. I asked the doc whether the biopsy would change my diagnosis and he said no. I just didn’t feel like having a (slightly) invasive test that would have no impact on my treatment plan.
cpick: TunaCat29: Thanks. I guess I’m looking for an easy fix and there just isn’t one. I’ve always been a fast food junkie and never put much though into what I eat, so this is hard. The bright side is that I’ll probably add years to my life just by not eating so much crap.
Post # 6
I think that eating out will be hard until you familiarize yourself with local restaurants that do gluten-free. Also, even if your entree is gluten-free, it can easily be cross-contaminated with gluten in the kitchen. I can’t eat at basically any fast food place anymore. If they deep fry your food in oil, I’ll guarantee you that they have deep fried something breaded in the same oil. Most commercially made sauces have gluten in them as well. Try not eating out and see if your body recovers. My doctor told me that it could take up to 6 months to get back into good health after I stopped eating gluten.
I would suggest buying a good gluten-free cookbook and playing around with that. In Canada, if you’re diagnosis is confirmed by biopsy, you get a nutritionalist to help the transition, and a tax credit to offset the added expense. Do you have a program like that where you live?
Also, even if you no longer have hives, don’t start eating gluten again. The way celiacs works is that it destroys the celias (little hair like things that increase the area so more nutrients are abosrbed) in your gut that helps you absorb nutrients. That means that even if you feel fine, your body is not absorbing the nutrients from the food you eat. I was diagnosed because although I eat super healthy, I always had these wierdly low levels of minerals, iron, etc. My doc ran a blood test that came back negative, and then a biopsy confirmed it. I’ve never had any sympthoms that would be indictative of celiacs, yet here I am!
Best of luck.
Post # 7
GrannyPantiesRock: the hardest thing for me wasn’t learning what to eat/not eat but is coming to terms with the fact it’s forever and I’m lucky as I’m only wheat intolerant. It’s still really hard though accepting that I will always have to worry about what and where I eat, it’s been four years and I still have times where it just pisses me off.
Post # 8
GrannyPantiesRock: Interesting, the doctors here always say that false positives on the blood tests are very common. It’s the negatives that don’t bother getting sent for the biopsy typically, I thought because false negatives weren’t very common. Maybe it’s a different test though.
Post # 9
Post # 10
I have many food intolerances: wheat, corn, soy, lactose, garlic. When i was diagnosed 3 years ago I thought I was going to die of starvation. Everything had one of the ingredients i mention somehow. I bought everything gluten free, but the problem was that the majority had corn. On top of that, i was a vegetarian, so meat was out of question for me. But i survived 🙂 I cooked a lot at home, used rice flour and almond milk, quinoa, rice pasta, i ate out (no fast foods, just veggies or rice) and the best thing: I lost 10 kilos 🙂 i learned about many other ingredients i had never heard of, i began a new lifestyle and i’m doing just fine. Don’t worry, you will find everything you need. It’s intimidating in the beggining, but you’ll be an expert in this matter soon 😉 And don’t worry about waiters. I was a waitress too in my youth and i know we use to feel empaty towards other waiters, but if you tell them you’re sick, they will be really nice and helpful 🙂
Post # 11
BIL is dealing with this now and the thing he struggles with too is being “THAT” person at restaurants. But it is your health and it’s amazing where stuff shows up you wouldn’t even think of. And if you have allergic type symptoms (the hives) then continued exposure can lead to worsening symptoms-like anaphylaxis, which is never fun. And lots of restaurants that have gluten free items don’t have gluten free prep areas. Domino’s advertises their Gf crusts but when you ask, it is prepared on the same flour covered counter as everything else. Cross contaminating is the worst.
Some good things we have found is buying a good base flour mix helps a lot. The texture of Girlfriend baking isn’t the same, but king arthur and bobs (I think, it has a barn on it, big name healthy flour) are good. They have gf boxed mixes that mean less magical mixing of 800 different flours of your own to get a decent texture.
Just cooking stuff that is naturallying Girlfriend is sometimes easier than trying to sub stuff because it won’t be the same. Buy a bread machine, they’re easy to use and the mixes are frequently cheaper and fresher than the Girlfriend bread you can get in most stores. Then you also know that it isnt cross contaminated.
Look at labels. Corn tortillas should be Gf but some places make corn/flour tortillas. However cheetos and fritos Are gf!
There are lots of bloggers who put out lots of recipes and substations, they are your friend. Also, sometimes when it isn’t clear the easiest thing to do is whip out your phone in the grocery store and google if something is actually celaic safe. Because not all gf is equal and if you question then someone see has and usually that means someone on a gf Web board has contacted the manufacturer about it.
It is a huggggee adjustment but how much better you should feel will be worth it.
Post # 12
About 80% of the restaurants I eat out at, especially if they’re bigger chains, have Girlfriend menus. But it doesn’t end there, cross-contamination is a real problem. I agree, being “that person” in restaurants sucks (especially if you’re out with a group… nooo) but I’d rather do my homework than suffer the consequences of accidentally eating gluten. I tend to study menus online and then you can call the restaurant to find out if they actually have a designated area for Girlfriend food preparation. Obviously you only have to do this once for the restaurant, so unless you’re eating at a different place every day, it’s not a problem. You can also Google a lot of big restaurants for people’s experiences with the Girlfriend menu there.
For really small restaurants where you can chat with the owner, they’re usually pretty helpful about modifying meals for you, so you can try that. I think your best bet there is to go for cuisines that are not gluten-heavy to begin with to avoid cross contamination as much as possible. (I know a couple peruvian/mexican places. I think Japanese/Korean might work, but just remember that soy sauce has gluten. I haven’t eaten there in a long time, but I think PF Chang’s was supposed to be one of the safer options)
There’s also some stupid, almost “trick” like foods you have to watch out for, like I heard that they sometimes put pancake batter in scrambled eggs to make it fluffier. I don’t know how true that is, but I do know that in some places I went to, scrambled eggs were not Girlfriend. So if you want to be really safe, you can order eggs poached, or hard-boiled, for instance. It sounds so crazy, but you get used to it 🙂 I would say you really need to get used to cooking most of your own meals yourself…
Post # 13
GrannyPantiesRock: Did you see a GI doctor somewhere in there? The stats you posted on celiac serology and biopsy are not accurate and false positives definitely exist. A GI doctor can also set you up with a nutritionist who specializes in celiac which would probably be helpful since a true gluten-free diet can be tricky.
Post # 14
- Wedding: May 2015 - Antique Rose Emporium
Depending on how sensitive you are, eating out is HELL. It sometimes feels like no matter how careful I am, the world is out to get me. I get sick from even the slightest cross contamination. I had to stop going to restaurants. I have to prepare all my meals myself as Fiance has accidentally gluntened me during cooking. You have to really educate your entire household. It’s a huge commitment, not just a diet, but a lifestyle. I sometimes get really angry with God for giving me celiac, but it has opened my eyes so wide to takig care of myself and watching what I put into my body. It drastically helped me cut out processed foods which I found to have traces of gluten. I have lost weight but still deal with occasional accidental gluten. Even finding a gluten free caterer for our wedding was very stressful because even if they *claim* to be gluten free friendly, you really have to ask questions and make sure they get what is at stake here. So don’t feel like a nag for asking about ingredients or food prep methods. It’s our health on the line. Not just an upset stomach. It’s not being sick as a dog in my wedding dress on my wedding day.
….my diagnosis changed my life. You aren’t alone-celiac awareness is on the rise!! Stay strong, lovely!