Auntie-Manda

Haha, I love all of these!

I have also gotten the "I wish I had that!" and I want to punch them. Every time. It's almost as bad as "I could never do that". Well, you could, if you had to...

Speaking of medical professionals, when I told my doctor that cutting out gluten stopped my migraines, her response was, "huh".

Re: people who are gluten-free but still eat it, I know someone who eats gluten all the time. Mostly she just gets diarrhea (which she doesn't mind), and if she eats it a LOT she starts to get migraines. And then it's "awe, man, I have to rest. This totally sucks". Her general philosophy, is that if she's going to eat gluten, she should have a lot so it can get out of her system...?  She makes no sense. This is the same person who told me that I can't have cheese because the anticaking stuff is flour (which maybe used to be the case but isn't); that gluten can be absorbed through the skin and make me sick; and that I can't eat meat unless the animal was gluten free as well. Until I did some research, I was living off rice and fruit. I lost 7 lbs in a month! She just wants people to think it is so hard, and that it sucks being her. And then she eats it anyways. GAH!

Maybe this belongs in a different topic, but my sister believes that I'm making all this up, so she refuses to learn about it and work with me when she plans family get-togethers (birthdays are usually celebrated at her house). So last night for MY BIRTHDAY, she made tacos (there were flour & corn shells, but I didn't know the brand of taco meat and I'm sure she wasn't careful about washing things well enough to make sure there weren't leftovers from another gluten-full meal, so I didn't have any). She asked my mom if the meat was too spicy (Mom was worried about that beforehand... it was fine). Then she served cake from Walmart. My TEN YEAR OLD nephew looked at me, alarmed, and said, "I think this cake has gluten in it. I don't think you can have it" (so sweet), and I reassured him that I wasn't eating it- just feeding it to my kids. I just thought, how crazy that with five adults around, the only one who even acknowledged my dietary needs was the ten year old. Sigh.

Yeah, I love those (with nutella or peanut butter)! It's my go-to snacky snack at work And they're so inexpensive compared to glutino.

Haha! I've never gotten any funny vegan comments, but a lady at my church approached me one week and said that since I'm gluten free, I should come to her house any time I want, and pick some of her lettuce and help myself. I thought it was so random! People seem to think that since so many things have gluten in them, that I must feel so fortunate to have every single thing that is gluten free. I actually don't love lettuce, so I've never stopped over, but it WAS sweet. My mother in law is always buying stuff and assuming I'll want it because I CAN have it. She bought some glutino pretzels (which I feel taste like stale toast), and every time I come over, it's "here's your bag of pretzels", like I'm obligated to eat them since they're gluten-free. I do appreciate the gesture, though.

I can have Act II microwave popcorn without issue. I've actually never come across popcorn that had gluten. If you are having a problem with popcorn ,it's probably not that it has gluten in it.

This JUST happened last night:

Me (to concesion lady at museum): Do you know for sure if the popcorn is gluten free?

Her: Umm, I don't know. Do you know if popcorn usually has gluten in it?
Me: Usually it's fine. Popcorn itself is gluten-free, but it would depend on the flavorings. I've never come across popcorn that wasn't. I just thought I'd double check if you knew.

Her: *terified look* It has salt in it. Is that ok????

Me: Salt is fine.

Her: oh, good. I was thinking about not eating gluten anymore, but I don't know what it's all in...

(Really? I couldn't have guessed)

Popcorn was fine, by the way.

Lol. These are funny.

Right? I HATE when people are like, "oh, I couldn't do that!" Yes, yes you could, if your health depended on it, and if you felt miserable for a week after eating a cracker. My 2nd most hated comment is, "that's so expensive, though!" Ok, well, forgetting the halthcare and medication required to NOT be gluten-free, may I remind you that rice is cheap, fruits & veggies & meat don't cost more than what you pay... it's only expensive if you buy the gluten-free versions of food that has gluten in it. And not being able to eat at resturants sure saves ME a lot of money!

Same for me! I will be 27 this month, and I have had a DAILY headache since middle school at least. Maybe sooner- I can't remember. I just remember taking excedrin regularily in middle school. I HAD to get help when they changed to daily migraines. Really, it was a month-long migraine that was better or worse depending on the day. I could hardly function. At times I couldn't function. I said good bye to gluten, and they disappeared almost immediately. I've lost 40 lbs, and I have ENERGY, and MOTIVATION now. This is definitely working out for me! Yes, she's my sister. I'd love to talk to her seriously about it, but she thinks it's a load of crap. You just can't change someone's mind when they have already decided what they're going to think. I AM making progress on convincing my mom to try gluten-free and see if it helps some of her symptoms. I worry about her because she doesn't have health insurance, and if her body is being damaged, it will cost a LOT to fix it someday.

Oh, and if I get annoyed enough, I will say, "You're right. I must be making this up for attention. It's just so much fun not being able to eat my favorite foods anymore." People are so dumb! Why would we make this stuff up?!?

I know how you feel! My sister thinks I'm making it all up. I told her about how I got deathly ill after taking communion (my pastor said he'd get gluten-free wafers and gave me a regular one instead without telling me). She was like, "really?!? From just one communion wafer?" Well, yeah, it's a lot of gluten! She's always asking, "are you still doing that gluten free thing?" Yes, I'll be "doing that thing" forever so I can be able to enjoy life and not spend it curled up in a ball crying in pain.I tried to tell her about how miserable I was with my daily headaches for 12 years, and when that switched to daily migraines in January. Her response: "well, everyone has headaches." (in a tone of voice that implied that I'm a hypochondriac).

People like that are the only reason why I would consider getting an official diagnosis ("real" celiacs give me crap, too. Like their issues are genuine & mine are made up. So sad!). I can tell myself that they are just ignorant, and it doesn't matter what they think because I am the one in control of my health. But it's still hurtful. I guess just try to keep educating people if they will listen. 

This morning I was thinking... I should write a book about all the ridiculous conversations I've had with people about gluten free diet, etc. I'll bet there are lots of stories out there... let's share. Laughing is a good way to cope, right?

So I told my coworker (who is also my aunt) that gluten-free diet cleared up my daily migraines (she has migraines often as well). Her response: "well I know that isn't the problem because Aunt F has celiac and she still gets migraines even though she's gluten-free". Sigh. Ok...

Here's another one:

LL: did I hear you are wheat free?

Me: yes. Well, I'm gluten-free, which is wheat free.

LL: Well, not all wheat has gluten.

Me: it does...

LL: No, there's this unaltered strain of wheat that some amish farmer in NY has.

Me: Ok, well I don't have access to that, so I'm wheat free. 

LL: *goes on to discuss just starting wheat free and seeing a big difference, and using coconut wheat (?!?) as a substitution*

Me: Well that's good. So wheat is definitely a problem for you, huh?
LL: For sure. I ate pizza all weekend and I'm paying the price now!

I'm sorry if anyone has already posted about these things. I did a quick search and found nothing.

I see that the McDonald's near me now offers gluten-free burgers. Has anyone tried this? Are they on gluten-free buns? I don't think I'll ever have the nerve to try them, but I wondered if anyone has and whether or not they had reactions.

I also see that Wendy's offers frosty CONES now. And now I feel like I can't have that anymore because the machine might touch the cones and get crumbs on it, and then I could get poisoned. Wendy's frosties were the ONE thing I felt safe getting, and I'm having a hard time coping with this. Has anyone had a frosty at a Wendy's where frosty cones are served? Any reactions?

Please & thanks.

I do myfitnesspal as well. It helps with weight loss But the mysymptoms app sounds really cool!

That's understandable. Dairy did the same thing to me before I went vegan. Some times a bowl of ice cream was fine and some times it wasn't, same with cheese. I'm not sure why unless it has something to do with damage done from gluten I read on another thread earlier today that went into depth about why dairy can be an issue for us I will try to find it and post it here.

And now you can handle dairy? Yay, there's hope for me!

Hmmm, well I eat tons of tomatoes with no issue, and the crust is just gluten free bead-type stuff, and I have other gluten-free bread, crackers, cookies, etc without issues. As far as toppings, I usually have chicken and/or sausage, which are both fine. I guess I figured that pizza was more problematic because there is more cheese than I would otherwise consume in one sitting- like maybe limited dairy is OK, but too much causes problems? I've had problems with other dairy things, too- like frostys from Wendy's and cheese (not on pizza). It seems really sporradic- like the same thing will cause issues one day and not the next. And if I can have dairy sometimes without issue, I want to!

I definitely have some kind of problem with dairy... Usually after I eat cheese (pizza is the worst), I get a pretty bad stomachache along with some cramping, bloating, and constipation. Some products with milk in them are fine and don't cause problems (like chips with cheese flavor). I just never know until I try it. After a particularily bad experience with pizza, I decided to trial dairy free for a few weeks and see if I felt better. Well, this is day 6, and things are going ok, I guess. I haven't seen any of the symptoms that I see from dairy. But... gluten free + dairy free is no fun at all! I don't really understand the differences between all the milk/dairy/casein problems that people have... Also, since it's likely that I have celiac disease, I hear that my body is maybe just still healing (gluten-free for 3 months only) & having trouble with dairy for now.

I take a probiotic daily, and I recently found out that they make a "lactose defense" formula. I'm wondering if this will work for me. But not really knowing exactly what my problem is, and if my body can't handle dairy because it's still healing, I don't know if it's a good idea. I just want to be able to eat food and not blow up like a balloon! Dairy free is for sure a ton more difficult than gluten free for me. So if there's a way to still be able to have cheese & ice cream, I want to know!

WWYD?

Hi, my name is Amanda, and I'm a junk food addict.

Judge as you see fit, but I miss animal crackers, ramen noodles, being able to eat out, stuffed crust from Pizza Hut, mozzarella sticks, deli soup (cream of chicken w/ rice and chicken dumpling, specifically), flour tortillas and the quesadillas they make, flaky biscuits and croissants, normal brownies and cookies, to name a few things. I hate it that my body hates the things my mouth loves!

I have issues with dairy as well as gluten. I found this out by tracking stomachaches. After I removed the gluten, I stoppes feeling bad all the time, and I noticed a pattern- I would get a stomachache shortly after eating dairy, and the stomachache's intensity depended onhow much dairy I had eaten. On most days I can handle a little bit, but if I had recently been glutened, I can't have any dairy at all for a good week (or else I get constipation and cramps/bloating sooooo bad!). When I'm having issues, I pretty much stick to rice and fruits/veggies. Sometimes I'll make some chicken rice soup, but that's about it.

Good luck figuring out all your issues! I do myfitnesspal.com for weight loss, and I've found it's very handy to have a record of everything I eat. In the notes section, I'll add symptoms and times (headache /migraine/ stomachache). That's how I could clearly see that all the stomachaches were after dairy. Also, I've found that gluten symptoms are always exctly 1.5 hours after consuming gluten, so I can rule out gluten based on time frame.

Oh, and I have so much more energy now! I've been able to exercise on a regular basis, and I've lost 20 lbs since Feb!

Disclaimer: I haven't officially been diagnosed, but doc said it's "probable" based on symptoms... eating gluten for several weeks to do the testimg would seriously kill me!

How old were you when you were diagnosed? 26

What triggered you to seek out medical help? daily headaches for 12+ years changed to daily migraines, and I couldn't function. Got meds for migraines, but was still getting migraines. gluten-free diet was suggested by a friend whose wife gets migraines from gluten.

How has life changed since your diagnosis? Well,  I don't have migraines I've been able to pinpoint different headache triggers, and avoid those at all costs. I've also been able to pinpoint how gluten affects me (migraine & stomachache 1.5 hours after eating it; constipation& bloating for up to a week) vs dairy isues (stomachache & constiation). I am learning my body and finding ways to feel good for the first time in as long as I can remember. Eating gluten-free isn't even a big deal because I am able to feel ok. When I get glutened, I lose a day with a migraine, and my stomach/GI issues take a week to go away. I am literally doubling over in pain most of that week. 

So a week or two I had some pickles from a jar clearly marked "gluten free". Tonight I had some pickles (Milwaukee midgit dill pickles) and didn't even think about it. Exactly 1.5 hours later, I got all the symptoms. I thought I was crazy, but I researched it, and found out that distilled vinegar is generally considered gluten free, but some have a reaction to it... Seriously?!? I am beyond frustrated. This. Sucks. I just want to cry.

I did not have a reaction to the normal or chocolate ones, but the warning says they are produced in the same facility as wheat ingredients. I don't understand how they can advertize "GLUTEN FREE" right on the front.

Thank you for posting this. It is something I have been struggling wth lately. I've been gluten-free since February, and my body is starting to heal after 12+ years of daily headaches (that turned to daily migraines in Jamuary), chronic fatigue, and other symptoms. I'm pretty upset that my doctor didn't have me do the testing when I saw her 5 days after starting a gluten-free diet and reported its immediate effects. But now that I'm doing better, I really don't think I would survive any repeated exposure to gluten. When I had a flour communion wafer, I was deathly ill for 3 days. There's no way I could handle that for long enough to do the tests. I do think that people think I'm making it up some times, and I'd like to have a diagnosis to "prove" to them that I'm not, but it's just not worth it. So I'll never know.

Of course, if one of my kids started showing symptoms, I'd push for testing right away before removing gluten.

OK, that is helpful. Thank you. I'm actually really annoyed that my doctor didn't have me do the testing. I saw her 5 days after starting a gluten-free diet, and told her it was helping already. She should have had me do the testing right away. Now I'm going to have to go through hell if I get tested. i seriously feel like death for 2-3 days after a teeny tiny bit of gluten.