Employer Doesn't Get It

[DesertRatCeliac]

Hi. I need to vent this and nobody around understands. I am a pharmacist, and after I got very sick a few years ago I was unable to work full time in a busy retail setting. I was lucky that the gastroenterolgist asked the right questions (was I on a strange diet as a child -yes) and thirty years later I am again. Today I work at remote hospitals in Arizona. One hospital serves gluten-free meals at the cafeteria. I like that place. Anyway, the agency I work for wants me to work 40 hrs a week, and drive 600 miles a week to work at a clinic. When I try to explain that after a 3-day stint it takes a whole day just to get energy enough to take a walk, they don't get it. I get tired. I get flare-ups, take prednisone and then get an ear infection. It's a cycle. When I'm on the road, I eat whatever I bring with me. It's not just an allergy, is it? They make me feel like such a malingerer.

[loco-ladi]

I know what you mean, if "they" dont have a close relative they generally assume things they have no clue about...

Ignorance may be bliss but not when it comes to this!

One idea, however cruel, would be to print off every single side effect, false diagnosis's, the list of safe and unsafe foods, including your own personal restrictions and have UPS deliver it to them, would not want you to have to carry that estimated 50 pounds of paper, wonder how long it would take them to read it, heck maybe the UPS driver would accidently drop it on their big toe!

[Nancym]

Well, I sympathize! There's so much ignorance out there and even though the information is being presented it takes forever to penetrate the collective consciousness of humans.

One thing though, can you bring/buy your own food when you go traveling? Do you stay in a hotel? Or is it that you're getting tired because your health isn't quite up to snuff yet?

[chrissy]

what do you get flare-ups of that you take prednisone for? sounds like you have more going on than just celiac disease. and you are right, celiac disease is NOT a wheat allergy. it is an autoimmune disease.

[miles2go]

Have you had your iron levels checked? The "malingerer" label got to me and I'm doing so much better with three iron tabs a day for 4 months worth!

Welcome!

Margaret

[happygirl]

If you are on a strict gluten free diet and have been for an extended period of time, and are still having problems, then it appears that you have non-celiac issues going on ... or damage from being undiagnosed for a long time. Either way, you may need medical follow up. (I wouldn't want other issues to be going on that get lumped under "celiac" as we all tend to do!)

[DestinyLeah]

Ugh. Bosses can be so much fun, eh?

Definitely give them some info on Celiac, since they are misinformed. Also, demonstrate technique for removing foot from mouth, as theirs seem firmly lodged.

At any rate, you have a right to be happy and healthy. Find out what is making you feel so blah. Even if you don't have to travel, I hate to think that you are stuck in bed, unable to enjoy your life. You deserve better than that! Get to a doctor and find out what is going on, and try new treatments. Whatever it takes to feel better.

I was stuck in bed today, and then realized I had forgotten to take my multivitamin. Easily fixed, and back on my feet. My boss was not all that amused with it, though.

[DesertRatCeliac]

Chrissy and all, I knew you'd come through. No, I have not had my iron level checked. Anemia is a classic symptom, but I didn't think about it. I live in hotels when I'm on the road. I mainly live on rice-noodle soup that just needs hot water. I haven't figured out why the cramps and GI pain won't stop (except while on prednisone) -then I read the thread about corn. BING BING BING. Corn syrup is in everthything! I thought that hummus, made of chick peas was ok. Guess what, I looked at the label tonight and it has corn syrup as an ingredient. I think somebody's onto something here. When I was a toddler and diagnosed with "failure to thrive" I was put on a gluten, dairy and corn-free diet. I remember eating rice cereal a lot. I developed a minor case of rickets from lack of Vitamin D and calcium, but survived. When the celiac came back as an adult, I became very careful about grains. I don't eat at restaurants or even risk McDonald's french fries, which were determined to be gluten-free, but not healthy. Geez. We at least get to enjoy french fries. I have a love/hate relationship with predinsone. It stops the symptoms by depressing my immune system, with quick relief. Then I get sick because of my depressed immune system.

My weird craving? Sardines. I figure it might be the zinc. My cracked lips and mouth sores heal pretty quick when I eat them. Kinda yucky, though. Zinc Oxide tablets cause awful nausea.

Hopefully my employer will take the time to look up Celiac Disease online. Fatigue is common, I think. It's tough mentioning that I might have to be near a bathroom when a hospital signs me on. My doc says that 6 months of strict gluten-free diet will clear my system of antibodies and I'll feel better. This has meant buying new cookware and utensils. Problem is, whenever I visit family I can't be assured about cross-contamination and have to start the six-months all over again. Well, thanks for your responses, big time.

[loco-ladi]

In my "real life" I am a railroad engineer, I work the "road" meaning when my phone rings 24/7/365 I have to be at work in 90 minutes and be prepared to be gone for 12-48 hours. I know EXACTLY what you go thru with hotels, we stay in what they call a "complex" ... fancy name for a bad hotel...

I travel in 4 directions from my home terminal....

West... full Kitchen awesome supportive regular people, love going here they even have made themselves a special area to make their sandwiches so I dont have to worry so much (except for the extra board peoples) ok so I still worry but I am not about to tell them otherwise!

East... cook top, nasty microwaves would rather die than go here

South run #1... no kitchen facilities, nastiest microwave in history of man shoved into trashed hotel room, do however have a country kitchen restraunt that can't get an order right if their life depended on it, oh but wait its not their life its mine so that explains it perfectly!

South run #2 ... mom and pop restraunt in complex building can usually get custom order (but this is where I got accidentally glutened) other than eat in restraunt "kitchen area" has 1 toaster oven(black inside from burned food) nasty microwave (some odd shade of brown interior)

As you can see, I take meals that can if needed be eaten warmed up or cold, its amazing what you can get used to when your health depends on it!

[DesertRatCeliac]

You hit it the nail on the head. The fairly nice hotels with microwaves that seem clean are iffy. I don't know if it's safe to heat water in them. The very remote places offer me a single-wide trailer. I have to pack some cookware and utensils for those places. It's getting very hard to travel with food I can eat. When I try and pack vegetables, they just go bad. I eat a lot of canned stuff and it can't be good. I am more concerned about not getting sick than getting adequate nutrition, at this point.

[Nancym]

You hit it the nail on the head. The fairly nice hotels with microwaves that seem clean are iffy. I don't know if it's safe to heat water in them. The very remote places offer me a single-wide trailer. I have to pack some cookware and utensils for those places. It's getting very hard to travel with food I can eat. When I try and pack vegetables, they just go bad. I eat a lot of canned stuff and it can't be good. I am more concerned about not getting sick than getting adequate nutrition, at this point.

Well, I'm not so sure that they don't go hand in hand (nutrition and healing).

I'd suspect you're eating things that'd still bugging you.

Microwave ovens should be pretty easy to work around. You can always place a plate on top of whatever you're microwaving to make sure something doesn't fall in.

I've always heard that pharmacists have a lot of opportunities, could you perhaps look for a job that involves less traveling at least until you're healthy again? It can't be good to have that sort of stress while you're dealing with a serious health issue.

[tarnalberry]

Chrissy and all, I knew you'd come through. No, I have not had my iron level checked. Anemia is a classic symptom, but I didn't think about it. I live in hotels when I'm on the road. I mainly live on rice-noodle soup that just needs hot water.

Two other things that come to mind:

1. Blood sugar issues from not getting enough fat and protein. (You can do this on the road, with some careful planning.)

2. Other nutritional deficiencies from a not-well-balanced diet.

[jambo massive]

Bosses are the worst i was in hospital this due to celiac and only had two day's off work first day back today and i have had a warning! because they thought i went out and got drunk yea i had a few drinks but i was tucked up in bed by 10:30. they just dont undertand do they

[angelbender]

desert rat......just wondering......working as a pharmacist, don't you have to worry about all of the stuff that you touch all day long? I mean, I don't know how many pills actually have gluten in them, but I just thought to toss this forward as somewhere you may be getting gluten. All of my pills I check online for gluten or have the pharmacy call the manufacturer (generic) and I make sure that they know that I need a clean tray and scoop when filling my scripts. I don't think it takes much stuff on your hands and don't forget, we touch our eyes, nose and ears too.........just wondering.......Angel