What Do You Say?

[Megan]

My first night gluten free grocery shopping...what fun! I'll share my funny first and then the questions

I visited the Wal-mart bakery last night and just out of curiosity asked if they had anything that was Gluten free, to which the baker replied, "Sure we have lots of things without sugar." I said thanks and then continued my shopping experience...

As we were shopping my beloved boyfriend was just throwing things in the cart and as I've come to realize some brands of the same thing may or may not contain gluten. Like some mashed potato flakes do but Wal-mart brand does not and actually says Gluten free. So I was trying to keep up and read the labels of what he was throwing in and reading the labels of the same product by other companies, because I really do love eggo waffles too and I really do love chips, and tomato soup too! and it was upsetting for him to just be so nonchalantly throwing all these things in to the cart without even stopping to check, and when I did taking off and grabbing more things I couldn't eat. So I started getting upset, and then he was reading labels with me (bless his heart, he was trying on occasion AFTER I got upset, lol) but he was reading them and saying I could have things I couldn't, so I tried explaining...and I got this

"I REALLY THINK YOUR JUST TAKING THIS WAY TOO FAR, JUST EAT SOME OF IT."

ok...

1. it's apparently really not good for my body from a medical standpoint

2. I feel like HELL as soon as I eat aynthing with gluten in it, automatically...I jumped for joy after my first gluten free meal because I felt so wonderful...I didn't swell up to the size of a beachball two minutes after my meal, or halfway in to it, I felt pretty dang good...and I was awake, and more "alert" I think you guys call that fog brain or something...

I think he thinks I'm some sort of hypochondriac... or something... I don't know I mean he's seen my stomach and how I can't hardly function after eating

I'm playing phone tag with two different doctors about this testing thing...I'm terrified to get tested and it be negative because then his support and my families can only get worse. Like I really must just be making it up...especially because within the past year or so I've had some really weird medical problems that have occured for no reason, like a seriously nasty rash, welt, swelling thing on the insides of my ankles that I've gotten the past two summers and not at any other time, that no one can explain and no medication fixes...NOT MY FAULT!!

I finally told him if I complained and whined as much as he did when he doesn't feel well he'd realize I'm not just making this stuff up...

but what do you do?? I have weird symptoms and their stuff other people have on occasion, how do I determine that mine are worse, I get that well i want to nap all the time too, bull...no I don't want to just nap I eat I swell and I fall asleep whether or not I want to...

I'm sorry this is really more of a rant than anything...I just don't get it, how do I make them understand

On a bright note I'm completing my first entirely gluten free day...EVERYTHING is gluten free (watch my Dr finally get ahold of me and send me for testing...uggh eating to be miserable!)

I cannot wait to see how awesome I feel...

[Lollie]

Hi Megan! I think that alot of us have had to deal with the insensitive family/sig. other.....It's crumby, but it seems to be some what normal. I think that if they haven't had to deal with this kind of pain, they don't really get it. I will share with you what I've done with my mom and others in my family. I try to only talk about success with the diet. I only tell them the good and reserve the bad for the message board. Sad but true. Everyone here understands, so I don't have to worry about any one thinking I'm a hypocondriac (sp?). This line of thinking has really helped my situation with my mom. I don't try to explain what I can or can't have, I just take care of myself. I share really good gluten-free stuff I make. I talk about how good I feel now. And I leave it at that.

I would try the positive road and come here when you need to, we all understand!

Lollie

[Rusla]

I drove the point home by using some medical conditions family members have to get it across. For my brother and his wife (she is diabetic) I said that I would eat gluten for a month if she would go without insulin for the same period of time. For my mother, I told her the same thing only she had to go without her Coumadin for the same length of time. Then they got what it would be for me to eat these foods.

[VegasCeliacBuckeye]

Its amazing how so many family members and close friends suddenly are able to become GI Doctors and Experts on Food Nutrition overnight...They obviously know everything about gluten, the immune system and hos you "feel"...

Some people can be so inconsiderate...

LOL!

[gabby]

Last time I checked, patient information was confidential...so go ahead and get your testing done. Keep the actual testing and the results to yourself...and only disclose this information if you want to.

It is okay to just tell people you have a health condition and that you have a restricted diet. You do not have to answer any other questions. Just because someone asks you questions about your health, does not automatically mean that they are entitled to an answer. A simple: I'd rather not discuss this right now, is usually enough to change the subject.

Hope this helps, and congrats on your first taste of freedom.

[penguin]

I was with friends this weekend, and as we were eating brunch at this restaurant, one of my good friends said, "well, if gluten is such a big deal, then why weren't you sick all the time?" I said that I was sick all the time for the last three years, and that I was very good at hiding it. Even DH didn't know until I did the testing. She knew I was sick some of the time, but she gave me the three headed look. I think she thought I was going overboard, exaggerating my symptoms, and being a hypochondriac.

Luckily (not for me but it proved my point), I got glutened. I got halfway through my meal and started getting the stoned, face numb thing. Everyone else knew something was wrong almost before I did. I was in a lot of pain by the time we left, so I think she's convinced since she saw it happen

It sucks that that is what it took, but once your family sees you sick, they'll have a better outlook.

[nettiebeads]

My first night gluten free grocery shopping...what fun! I'll share my funny first and then the questions

I visited the Wal-mart bakery last night and just out of curiosity asked if they had anything that was Gluten free, to which the baker replied, "Sure we have lots of things without sugar." I said thanks and then continued my shopping experience...

I loved it. I'm still laughing after reading all of the rest of your post and responses. I never get over how uneducated people can be. But in the bakery? What do they think makes the bread rise the way it does? Bread fairies???? I was at a conference once and the meal served was chicken alfredo over penne. I said I can't have that, needed something different (before I got my triumph dining cards) and a server came up to me with a plate of the chicken stuff and said that there wasn't any gluten added to the dish. DUH!

If you have the money, you can do enterolab which is supposed to be more accurate than traditional testing. The blood work and endoscopy can have false negatives; way too often for me to consider them reliable. The best and most foolproof testing in my opinion is your own body. I was tested via diet challenge 9 years ago and that's been fine for me and my subsequent drs. (although I did have one internest say I could probably have gluten in small amounts. It was obvious she didn't know a thing about celiac). The diet challenge (which is what you are doing) is a valid diagnostic tool. And as far as other people thinking that you're overreacting - use the poison analogy. Ask them how much arsenic can they have without it being too much? Or just say "I know how I feel with gluten and without gluten." End of story.

But please feel free to come here and vent or ask questions or anything. We understand so very well how much fun it is coping with this disease.

Annette

[eKatherine]

A funny:

I was explaining to a woman where I was working that I was going to skip the holiday party they threw for the workers because there was no food provided that I could eat, Pizza Hut pizza and supermarket bakery cookies only, as I couldn't eat wheat. She was dumbfounded. She said to me, I could eat the pizza made without the wheat flour, couldn't I? She was fully convinced that some pizza is made with wheat flour and some is not.

[cornbread]

Megan, for $99 you can get tested by Enterolab. Open Original Shared Link. The stool test they do is way more sensitive than a blood test that a doctor would do, so, based on your symptoms, it's highly likely you'd get a positive test result.