Frustrated..

[sp0rk]

hey guys. i'm new. i guess i'll start from the beginning.

i've been sick pretty much my whole life (i'm 23 now).. and no one ever knew why.. last year, it got really bad. i was out of work for six months with severe abdominal cramping and the like, and no one could figure out why.. i had an abdominal ct, ultrasound, the works.. finally, my GP diagnosed me with excess acid in my stomach, and things seemed to get better. then six months ago, i started having the evil D on a daily basis. the only way i could function was to take immodium up to 5 times a day. it sucked. again, no one could figure it out, and i was therefore diagnosed with IBS.. great. okay. that's when my dad pushed me to go to my GP again, thinking he figured it out last time.. now, he had already been sent all the other tests the clinics had done, and knew exactly what was going on when i walked into his office. BAM, celiac. this man is honestly a genius.

so flash foward to today, and i'm only a week into the gluten-free diet. i was feeling great.. no headaches, no nausea, no D, no fatigue, no other symptoms that i don't have time to write out right now.. it's amazing, really.. but then of course, last night, my husband decides to make dinner.. some sausages on a gluten free bun.. AWESOME. not. i've been glutened. by the stupid sausages.. i feel horrible.. ugh.

my husband, my parents, even my sister.. don't seem to understand how something that says "may contain traces of wheat" can make me sick.

how does everyone else deal with this? i honestly feel like no one cares, and that's really hard.. they all say i'm being extreme, and that a little bit won't hurt me.. but they're wrong.. feeling like this after two bites of sausage is not okay..

any ideas how i can get it across to them?

[lilu]

One thing I have found helpful is to provide them with MEDICAL information. Unfortunately, it seems that those who don't want to believe in the strict adherence required also don't put a lot of weight in information from sources such as blogs, forums, etc. When I've come across this kind of attitude, I find whipping out the "official" guns can help.

Here is a link to the University of Chicago Celiac Disease Center's website, and it comments on the importance of strict adherence.

Open Original Shared Link

1/8 of a teaspoon of flour can keep your body from healing! In other research, I've seen "1/30 of a slice of regular bread". There is more info out there. So when challenging skeptics, I recommend supporting your arguments with info from sources they are more likely to accept.

I know it is frustrating, but you can do this. Become an advocate for yourself. Stand up for what you need. In the end, hopefully they will gain added respect for you.

[kwylee]

I'm like you, I react to trace amounts. Without the support of my husband, I don't now what I would have done.

Everyone on this forum knows you are not being extreme. I have a feeling you'll get responses on this post, and when you do, please show them to your family.

Here's my two cents:

To all family members - I know it's hard to understand how this lifestyle works at first, I know it seems like a new concept, but gluten intolerance and Celiac disease have been around forever. Unfortunately, many like your loved one have suffered symptoms for YEARS that went undiagnosed. But it doesn't make it any less uncomfortable just because a doctor who may not have learned this in medical school, missed the cues. There is a lot of internal damage that this little gluten protein can cause EVEN IN TRACE AMOUNTS, and hopefully science and doctors are starting to more easily recognize the signs and symptoms. It starts with education. Gluten cross contamination is real and painful when your body is intolerant. Being totally gluten free is not a fad diet, it's a prescription, and the cure. And with your understanding and support, this can be so much easier.

[Skylark]

Does your family understand allergy, how kids with peanut allergy can go into anaphylaxis from traces of peanut? Or do they understand how well the immune system tracks down germs to keep us from getting sick? You can work from that to remind them that it's that same immune system that is tracking down wheat.

I sometimes say my immune system is on a "seek and destroy" mission for the tiniest amounts of wheat, and that there's no fooling it!

[sp0rk]

thanks for the link! and thanks for the advice.

my mom is actually a nurse, so you'd think she'd be a little more understanding, but i think she might just be skeptical because of all the diagnoses i had before that didn't pan out.. i had a talk with my husband after i got home from work today, and he seems to be a little more receptive (he's cooking dinner as we speak - beef tenderloin with mashed potatoes, asparagus and carrots - YUM!)

i think i'm gunna send my mom the links, and hope she shows the rest of my family. i just want them to understand, especially during family dinners and the like, that i'm not being picky..

i'm hoping this gets easier with time.. and places like this will help along the way!