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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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jamiecasabellameeks

How To Tell The Boss...suggestions?

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Hi, does anyone else have to miss work periodically??  I just want to hear that I fall in the Celiac "norm" if you will...I do have stomach "issues" for sure, but that does not seem to be what DEBILITATES me.  My worst symptoms are dizziness, nausea, brain fog, sudden depression, slurred speech, and extreme fatigue/weakness that seems to immobilize me.  I have been gluten free going on three weeks with confirmed Celiac disease diagnosis. I can honestly say that today I feel the best I have felt thus far.  However, one day last week--I am pretty sure I "accidentally" glutened myself somehow.  I could not go to work the next day.  There was just no way.  I am wanting to know if anyone else has similar symptoms and what you tell your boss.  I would honestly like to give him a handout of some sort that explains just how severe the symptoms can be, in case this was to happen again in the future.   Anyone have any suggestions??  THANK YOU SO MUCH!!

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Jamie.....I don't think it's a problem to miss work if you really are too sick from a glutening, however, it could become a problem if it happens too many times.  This isn't any different than people who get sick with the flu or a cold.  I think many employers are pretty accommodating but patience will wear thin if a person is being careless or abusing the system.  It depends on how much you want to stay employed.

 

When I was first diagnosed 8 years ago, I was a total mess but was concerned about my job.  I take my job seriously and hate to miss work. I went back to work after one week and wobbled in.  I have a sedentary job so went in every day and did my best effort.  They knew I was not well but I took no risks with ingesting gluten and weathered through the rest of it.  I was the walking dead, very thin, and I think I scared everyone when I came back but they left me alone and I did the best I could.  I actually got a decent amount of work done but because I made a supreme effort to be there every day, they cut me a lot of slack while I was there.  I think if you have an honest conversation with your boss and tell them you have no intention of skipping work without a very good reason and you'll do your best on your job while you are still in healing mode, they will appreicate that.  It all depends on what kind of relationship you have with them and other factors. Maybe a note from your doctor, explaining how it takes awhile to heal from Celiac and the severity of symptoms might help.  I know it is really hard to balance work and recovery but it can be done without jeopardizing your job.

 

Hang in there because once you heal, you should rarely miss work due to Celiac.  I have only missed one day in the past 4 years due to an accidental ingestion and it was pretty bad. But, I took one day off, rested, and went back to work the day after.  I still wasn't feeling great but good enough to go to work.  You just need to be patient because it can take 2-3 years to

get to that point but it will happen for you, once you become a gluten-free diet expert!  ;)

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Thank you for responding! I have only missed work once from being "glutened". I think it must have been cross-contamination, because I have not INTENTIONALLY eaten anything with gluten since my biopsy.  I am starting to see the light for sure!  I just honestly get tired of explaining myself over and over.  I just wish I could say "Here, read this!" It's so much more than a "stomach-related" disease; I honestly didn't realize how severe symptoms could get until I experienced them myself.  I just wish I could find it all just laid out on paper for someone...Most handouts I find discuss D, constipation, bloating, gas...But that's just not me.  I have more the neurological side effects and just don't feel like I'm doing a good job explaining the whole thing...especially, if I'm experiencing brain fog at that time! Can't get a coherent sentence to come out for nothing! I hope to not have many more days like this! FINGERS CROSSED!  :unsure:

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Oh, I understand completely!  I had gastro and neuro symptoms and it is incredibly frustrating to try and explain celiac to the general public because they are clueless about food issues in general.  That is something you will have to get used to and have patience trying to explain it all.  This is the "take an antibiotic and feel better in a couple of days" crowd.  I also never intentionally eat gluten or take unnecessary risks but sustained a hit about 3 months ago, from a minute amount of cc, and I thought I was going to have to go to the ER....it was horrible.

You'll find the longer you go gluten-free and heal, the worse the symptoms are when you take a hit. Sorry to have to tell you that but most Celiacs become more sensitive the longer they are gluten-free.

You'll learn to deal with it all but don't worry, you will get better like the rest of us....just be patient.  You sound like a good employee so I'm sure if you have a talk with your boss, they will understand.

 

http://www.amazon.com/Real-Celiac-Disease-Melinda-Dennis/dp/1603560084  This is a book I have yet to order but others have been raving about it.  Maybe something like this will give you ideas for explaining things to people.  That's a hard road to take because of what I mentioned.  Most people think you get diarrhea and a tummy ache from celiac, they have no clue about all the other debilitating symptoms.  I had brain fog so bad, I had to stop reading books until I got better as I couldn't remember the page I had just read.  I was walking into walls!

It all goes away with a strict diet and patience, I promise!  :)

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Uh, really, there are some things in detail that don't have to be shared with anyone else in the workplace.....  if you had food poisoning you don't have to "share" the details of every moment in the bathroom, :blink:  if you have a period that lasted 12 days and nearly caused you to pass out from anemia you don't have to share the details of how many maxi pad boxes you went thru, :o  if you get migraines must the stabbing- icepick- behind- the eyes sensation, when the light hits just so be described in all its glory :ph34r: ....  isn't it enough to just be "sick" ?   :rolleyes:   If you're trying to explain the neuro effects to the extent that they would be comprehended by a non- celiac/non glutie intol, it might very well frighten them into the idea that you may not be able to do your job, when of course you can do your job, but you need a little break, because these are for the most part temporary side effects, and you have a lot more brain capacity as a sort of "spare" than is the minimum to function. 

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I tend to describe it as feeling like flu without the congestion, which seems to get across the severity without too much detail...

Good luck with recovery

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I wouldn't go into detail either. A simple " I'm too sick for work" should be fine as long as you aren't missing a tonne of work.

 

I hope you feel better.

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I go for the general statement as well. Like nvsmom said, "I'm too sick for work" is enough.

 

However, once I realized I had a long-term problem, I did sit my two bosses down for a chat and just explained to him that I have a celiac-like gluten intolerance and in the near future may have to miss work here and there, either because I might get suddenly sick or for ongoing medical testing. They were very understanding and now if I have to call in sick, I just tell them it's that gluten thing.

 

Of course I didn't HAVE to tell them my diagnosis (or quasi-diagnosis in my case), but I feel comfortable enough with them to do that.

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I was not implying that anyone has to go into the gory details about their health issues but you have to have a good conversation with your boss and at least tell them you are Celiac.  You also have to let them know that it is your intention to do your very best on your job and you will not abuse your sick leave.  I have had my job for 30 years and know everyone like family. In fact, I got a few of them eating more gluten-free snacks after they saw my amazing return to health.  We joke about it and they are always willing to try my snacks I bring in.  But they understand what happens when I get sick, even though they are rare occurances.  I have only had to call in after a glutening once in 8 years and they all were very concerned, which is nice.  I find the more serious you are about your job, the more accommodating they are when you are sick.

 

I find the more annoying problem are doctors who think you have all this free time to come in for appointments.  I am not big on medical testing, unless warranted,

and have had to tell my doctor that I am not willing to keep missing work for all these perceived tests they think you need to have. Sometimes they are out of control on that front.

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