emotional impact of celiac disease

[rm]

While there are obviously other things going on in a lot of these comments, it's worth reading. A lot of the stuff people describe applies to me, and a lot of it doesn't, but what strikes me the most is yes, how much harder I have to work to not be a fearful person now. And amazingly, I'm largely managing it.

http://community.livejournal.com/celiac/408827.html

Comments

[schpahky.livejournal.com]

I feel slightly better now about crying in the bathroom when my coworkers had the pizza luncheon right after I was mandated to avoid fats, acidicic foods and dairy. Good god. And that was (mostly) temporary.

[fuyukodachi.livejournal.com]

I was very depressed last night because I wanted to eat a grilled cheese sandwich and couldn't. But my excruciating IBS seems to be gone, which is strange enough to be somewhat disturbing. My lower abdomen has been more or less hard for seven years or so, and it isn't, anymore-- it feels like a normal person's. I'm sure I'll be happy once I stop feeling freaked out.

[blu-22.livejournal.com]

What exactly is Celiac Disease? What are the symptopms? How did you come to find that is what you had? I looked a bit at the website for it but I'd rather hear it in your own words rather than try to decipher medical jargon.

[rm.livejournal.com]

celiac is an inability to properly digest gluten, which is found in wheat, rye, barley, spelt and many many other common grains. It means that eating foods that contain gluten (most packaged goods, many processed meats, all traditional breads, anything made with undistilled white vinegar) or that come into contact with it make me seriously ill.

When exposed to gluten a celiac's body basically tries to destroy itself ulcerating the intestine 9which heals when gluten is removed fromteh diet) and destroying teh vilii (which do not regrow) permanently harming the celiac's ability to absorb nutrients.

celiacs suffer extreme pain, diahrrea and intestinal bleeding if they eat gluten. Celiacs also tend to suffer from rankiness and mood disorders, an inability to gain wait, skin, hair and teeth problems, neurological disorders and are at increased risks for certain types of cancers. While being gluten-free means being largely pain free, those other issues do not go away.

Most celiacs are diagnosed in childhood. Some people have the disease as "adult onset" but in reality they just had a milder form of it until some adult triggering event, like food poisoning (this is what happened to me).

Technically I am "presumed celiac" -- to get an official diagnosis I would have reintroduce gluten into my diet for six months, have an intestinal biopsy, remove gluten again and have another -- I would be to ill to work if I did this, and therefore I won't -- since there's no treatment, there's little to gain from a more complete diagnosis than I have.

[blu-22.livejournal.com]

What were the milder symptoms you had before the trigger? The reason I'm so curious is that a lot of this sounds like stuff my mom has had to deal with, except for the excruciating pain really. I'm wondering if this might be something she has.

[rm.livejournal.com]

For me, nothign that looked like symptoms.

I've always beeen cranky and irritable, have dealt with depression on and off. Very weak teeth that doctors always accused me ofhaving bulemia (apparently, this is a common thing in celiac's teeth), oily skin (the ability to process fat correctly is sort of teh first thing that goes), some random nerve pain and numbness that had emerged over the last two decades.

The good news, such as it is, is that if your mom stops eating gluten for two days and this is what she has -- she'll know because she'll feel so markedly different so quickly.

[blu-22.livejournal.com]

Hmm. The only other thing that doesn't match up is that we're a family of heavy people. Thanks for all the info. =0)

[rm.livejournal.com]

I do know some celiacs who are heavy. Does she tend to have eally extreme food cravings? Not weird, just intense? I ask because until i stoped eating wheat I suffered from that CONSTANTLY, and then once I stopped and was able to get nutrients better I ate a lot more normally.

[blu-22.livejournal.com]

Umm...yeah I'd say so. I mean not all the time but it happens. She plans on mentioning it to her doctor when she speaks to him next.

[graene.livejournal.com]

I have to admit, I'm really curious to meet the not-so-irritated you. Also, everytime I contemplate you in my home, I get the screaming meemies about probable contamination from my kitchen. Which is not to say you're not still very welcome with a standing invitation. Just that I'm not sure exactly how food will be handled if you come, but I imagine the dollar sushi place will figure into things.

[rm.livejournal.com]

As long as I have my wheat-free soy sauce, sushi is great. as long as flour is kept in sealed canisters or doubled or trippled plastic bags and counters get wiped down, I'm fine. Megan has bread in the house, and I've yet to get contaminated here.

[graene.livejournal.com]

Cool. But still, if said visit ever happens, try to give me enough time to thoroughly clean oven, fridge, etc before you arrive just in case. For my own paranoia if nothing else. They'll probably need it anyway.