Celiac Disease


#1

Does anyone have it here? Because I’m in need of some real help. I know there is forum dedicated to it on the web but I’ve had some issues creating an account so I’m resorting to SRK GD.

My day to day life is fine. I know what I have to do to and I’ve been living without a reaction or symptoms for the past 6 weeks. During that time I had made quite the headways in recovery.

What now?

My job sent me for a 1 week assignment west of Chicago. I thought, that’s fine, I know what I have to stay away from. WRONG! I have no control of how the food is handled and I’ve been getting reactions left and right constantly.

My question is this if there any celiacs out here: How do you cope with travel?

It’s been two and a half day of traveling and I can barely walk.


#2

I dont suffer from celiac disease , but from what Ive studied in medical school , it must be a bitch.
I know this doesnt really help you out per se, but here are some links that may help

Since you mentioned Chicago:



http://www.celiactravel.com/articles/


#3

Every bit helps, I appreciate it.

I really don’t think I can travel because even if I eat something truly gluten-free, is there is a sky-high probability that the food has been handled in such a way that will give me a reaction.

I’m really scared. I might lose my job because it requires %40-60 travel. I have told my boss a long time ago and I thought I could pull it off/suck it up when I travel but I’m like a wreck. I don’t know how my boss is going to react.


#4

If youre in south chicago, and like thin crust pizza or sushi, (53rd street, )

http://www.thesitdown53.com/html/gluten_free.html


#5

bring your own food, probably assloads of rice.


#6

My boss was just diagnosed with this. He fucking hates it, obviously.


#7

Traveling? Go home and be a family man left or right
The sun or the moon
hot or cold
far away or near

It’s always 2 things fighting isn’t it?

balance it all out

eat some bowl of wheaties and bowl cheerios

Get it? Balance it out


#8

I can’t take this anymore. I feel like I’m really close to dying.

If my boss says something like, “Tough luck, you’re fired” I’ll take it okay. There is nothing I can do about this sickness while I’m out traveling. Home base is no problem since I have full control as to what I eat. If I lose my job due to an illness-- so be it.


#9

fuck that. if you get fired cause of that, sue. you’re ATTEMPTING to do your job. being unable to is a completely different story


#10

A close friend of mine has celiacs (and is also lactose intolerant, lol). Aside from cooking for himself at home, he tells me he’s just extremely careful and inquisitive anytime he eats out.

For example: if you want something fried, make sure it’s not fried in the same oil as anything with batter (i.e. McD fries are safe, but Burger Kings are not).

If you’re getting anything that has some sort of sauce, ask specifically what goes in the sauce. If possible, always, always check the ingredient labels. Some things you might not expect sometimes contain wheat, for example, some brands of soy sauce, and some brands of soda.

Examples of some safe restaurants:
any kind of authentic-ish Chinese restaurant (white rice + bbq pork or something - none of that sesame chicken stuff, since they tend to be battered up. You never know if the battered stuff is cooked in the same pans as the fried rice, either).

Chipotle burritos! Or their competitors (Freebirds? Qdoba?). Order the “burrito bowl” - everything is safe except the tortilla.

The majority of sit-down restaurants will have a gluten-free menu. If the waiter isn’t sure about something, make sure he asks the chef.

Last resort: go to 7-11 and buy a pack of beef jerky.


#11

Saw this and thought… hmm we’re taught not to give medical advice because we’re not qualified yet, blahblahblah. Anyhow:

Celiac disease never goes away ‘for a period’ and you’re right in the sense that one small thing that doesn’t agree with you will trigger off your immune system.

I’d personally avoid anything that could possibly have gluten in it.
If at a restaurant, ask for gluten-free products… and if not, then try to be sensible in asking yourself whether the food you’re going to buy has come in contact with anything that might upset you. Since you’re in the US, it’s not like you’re alone and don’t be afraid to ask the venue you’re at because it’s a relatively frequent thing to see.

You can’t be fired because you have celiac… but if you can’t perform your job duties, that’s another thing.
Stress is also a potential factor that makes things worse, so chill out a bit if you feel a bit queasy when you can.
What specifically did you eat whilst on your assignment that triggered things off? That would be helpful to know…


#12

I’m really scared. My boss officially told me that unless I travel, I’m getting fired. I can’t travel. These past days, I’ve been eating things that are perfectly safe for me yet I’m still reactive because the food has cross-contaminated.

I just talked to one of the higher ups and he said unless I have an official diagnosis, the company can’t do anything for me. The thing is, diagnosis is very difficult to do and the chances for a misdiagnosis and/or a false negative is very high. Not only that, the testing requires that I’d go on a gluten diet for four weeks of which I cannot do even for a day.

I really need help. Please help me.


#13

^Juicy lawsuit, imo.


#14

Hard to say, a lot of celiacs get misdiagnosed/get false negatives yet they know themselves they got it. So the company has grounds to deny charges.


#15

Ok, I thought that you had a diagnosis. Anyhow, what I’d suggest is to pack non perishables for when you’re away. Any reason you aren’t diagnosed then? Clearly you have clinical symptoms and have had them for a while.


#16

I was on the gluten-free diet for 6 weeks. All my problems vanished in one day or two. All my symptoms are classic of celiac, it fits like a glove.

The reason why I hadn’t had it diagnosed was that I was able to figure out my problem out and solve it pseudo-completely. I know what I have and I know how to deal with it. The problem is when I have to travel for work.

Celiac disease is very hard to diagnose. At this point, my tests will most likely tell me I’m negative hence a false negative because I’ve been gluten free for a while. Gluten free means no reaction, no reaction means no detection. All the while I run risk of running into a doctor that misdiagnoses me or tells me, “it’s all in your head.” This is a slap in my face because I can tell the difference between having a reaction to being normal like night and day.

The batteries of tests that are conducted to diagnose celiac disease are first a blood test. This blood test checks for certain antibodies that your body produces while going through a reaction. These antibodies in turn target the small intestines and thereby creating a myriad of problems. This test is SUGGESTIVE. It is impossible to get a false positive but the chances of getting a false negative are high especially if I hadn’t had any reactions for the 6 weeks, discounting this week since I’m traveling.

The second test that is performed is a DNA test. This test can only SUGGEST that you MAY develop celiac disease in your lifetime.

The third test is a biopsy where someone shoves some instrument down your throat to cut a piece of your small intestines to check for damaged villi. Villi are the epithelial cells in your small intestines that absorb nutrients. Damaged villi means your malnourished. These are damaged due to the antibodies created by your body from exposure to wheat/gluten/etc… Very similar to Type 1 diabetes.

These tests are highly subjective and do not lead to treatment. The only treatment is what I’ve been doing for the 6 weeks.

THE PROBLEM IS: My job requires travel. Eating out means cross-contamination which equals me endangering my health to the point I can’t function. I told my boss I can’t travel anymore for the aforementioned reasons. My boss comes back with “If you can’t… then we’ll have to end employment.”

I checked with another higher up and he told me (to excuse the company from legal liabilities) that I need an official diagnosis from a licensed professional.

THEN WHAT? “I don’t know.”

I’ll go do a blood test. If that comes back negative, then I’ll resign. Nothing else I could have/haven’t done. Many people lose relationships, golden career opportunities, jobs because they couldn’t figure out what was going on until YEARS later after YEARS of misdiagnoses until they’re a walking wreck. Consulting “licensed professional”, being told “you’re lying” “that’s in your head” all the while suffering not knowing what to do. I was smart to figure it out before anything serious happened like gastrointestinal cancer. The same people who are lying and being “in their head” and tried a gluten free diet (you know on a whim, following the latest fad) and lo and behold problems that have been plaguing and ruining their lives for years JUST disappear in days? COINCIDENTAL? PLACEBO EFFECT?

I have done my best for the company. My heart. My soul. Into the work. All to make the company number one.

Now my company wants to compromise my already wrecked health? Even my life? Because of a “business formality”? Because I haven’t performed my duties? Who hasn’t fulfilled their duty and I haven’t?

Aargh, I wrote too much.


#17

I figure most companies would be sympathetic to people with medical conditions but yours just shows the “not my problem” attitude.


#18

Calm down. I understand the tests are not 100% and very few things are in medicine.
Not sure how understanding your gastroenterologist is, but I’m surprised that you describe your treatment in such a light

I don’t want to see you lose a job, but if you can’t handle traveling till you’re better is try the food poisoning card. Otherwise I’m sorry to say that the boss doesn’t appreciate you enough to continue working there.


#19

I appreciate everyone’s support. It’s been really helpful.

I’m not sure what you mean by describing my treatment in such a light but after figuring what triggers a reaction, it was pretty much a straight shot. I knew but not realized that cross-contamination could trigger off a reaction. I also live by myself so I have complete control over what equipment processes what food, and what food enters my mouth. I think one the biggest key in celiac disease is control. Obviously, eating out, you have no control.

A lot of celiacs had to quit their jobs. There are a lot more tragic cases where the misdiagnoses and not knowing time period goes on until something lethal happens such as some sort of cancer or lethal disease.

I really appreciate everyone’s support, really. This situation doesn’t feel as out of control now.


#20

I am laughing at the fact that you refer to you and others with this condition as “celiacs” because it just makes me think you’re like dirty muties or something equally funny and yet fearsome.

“GET AWAY FROM MY DAUGHTER, YOU DAMNED DIRTY CELIAC.”
“But Dad, we’re in love!”

What is your concern with getting a diagnosis? Does it have to be done by like a company licensed doctor or something? Couldn’t you just explain your situation and all the facts about your own personal experiences with gluten to any sensible doctor (which would point to a very likely positive diagnosis in their eyes) and then just get tested until you get a positive? If you get a false negative then can’t you go to a different doctor or do the test again or etc.?

Once you have that, I would think that any company would be pretty scared to discuss termination with you ever, since that would seem to be like a pretty easy lawsuit to put together. I bet a ton of lawyers would jump at a chance to take a case like that. I assume that the impracticalities of traveling with such a condition are well documented in a legal sense/employment sense.

It’s sucky that you can’t go about day to day life, not being able to eat or partake in activities that I take granted for. Every time I walk down the gluten-free aisle at the supermarket I just laugh because I think it’s just stupid new age hipsters trying out some dumb diet. I forgot that there are actual medical reasons people cannot consume gluten. So now I feel kind of bad.