Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Time Off Work?


masterjen

Recommended Posts

masterjen Explorer

I've been gluten-free for about a month. Since the beginning (and still now) I am battling with low energy, muscle weakness, rib discomfort and hours-long headaches (which sometimes become migraines). I am feeling like I am unable to keep up with the work-load at my job, even though the work hours (at my doctor's request) have already been cut back a bit (I am currently working 4 days per week instead of 5, and 6 hour long days instead of 8). I find that on the days I work, I do nothing in the mornings before I work except completely veg. out, and in the evenings I have no energy to do anything except sit around and try to regain some energy for the next day. If I do exert myself during these pre-and post-work hours, I get more pronounced headaches, episodes of greater muscle weakness than usual, and "brain fog". Basically, these days I am living to make it through work. I wasn't at all like this before I was diagnosed with Celiac. Normally I am energetic, and am able to run and work-out 4 days of the week. I know and have largely accepted that it will take time to get back to how I used to be.

My employer is becoming less and less sympathetic with each passing week, because she is faced with staffing shortages and is pressuring me to work more hours. I'm feeling like a wimp, and beginning to feel like others think I am faking all these symptoms (which I'm NOT!)

Has anyone else had to cut back on work during their recovery (intestinal healing, I guess I should say)? If so, how long did you need before you went back to work full-time? How did you approach your doctor about this? How did you approach your boss/supervisor?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



buffettbride Enthusiast

My best friend has Crohns and has similar problems with her job. She was recently approved for short-term disability after having to have emer. surgery for an absess in a not-so-fun-place.

Is short-term disability leave an option for you? It might give you some time to let your gut heal and release some of the stress from work in your life to focus on the diet. You can use this time to figure out how to stay healthy at work and avoid gluten every day. My friend was able to take 6 weeks off at 67% pay to recover and heal.

When you apply for short term disability, you are also automatically applied for FMLA (family medical leave act). I know at least with my friend, when she needs to take a "crohns day" or in your case a "glutening day" it is covered by FMLA. You might not necessarily get paid for FMLA time, but it will keep your job protected while you deal with a health condition.

My heart goes out to you--I think this healing and coping part of Celiac is a much rougher road for adults, unfortunately.

DonaldandAlanda Evans Apprentice

When the doctors couldn't figure out what was wrong with me, I went on FMLA. I eventually quit my job before I was diagnosed. I am now colecting unemployment.

Takala Enthusiast

It sounds like you have something else going on physically, especially with the migraines. Either you are accidentally cross contaminating yourself, or you could have another food intolerance or allergy, especially if you are eating some of the substitute gluten free foods. You could also have thyroid issues or auto immune problems.

I would go back to eating very, very basic unprocessed foods and keeping a food diary where you write down everything that you consume, so you can correlate and track when the migraines show up.

I have gotten horrific migraines from some common but unknown flavoring agents such as in the soy milk used at Starbucks, (more than once) , Starbucks also serves certain flavored Tazo Teas that have gluten ( I have an opinion of this, but it's unprintable, wheat does not belong in tea ) another certain brand of gluten free hemp milk before they reformulated it (that was fun figuring that one out, as it must have been a bad batch, I am since okay with the new formula) and a certain type of cough drop. I also have bad luck with sunflower seeds that have been processed in any sort of oil because of cross contamination issues, ( I noticed the idiots at Whole Foods now package their sunflower seeds in a plant that also processes wheat, in Texas, instead of North Dakota, which means I'm back to square one on that :angry: ) and have had the same problem with oil in dried cranberries.

Some people with gluten intolerance find out that they can't tolerate dairy and/or lactose, other find soy products don't work, still others have problems with corn or potatoes.

Other hidden sources of cross contamination:

If you haven't already, you also may need to purge your kitchen of certain baking pans and plastic tupperware you can't get completely clean, and treat yourself to nice new clean ones. Ditto wooden cutting boards.

Lipstick. Shampoo and conditioner with wheat protein. Hand lotion, if you eat with your fingers alot while typing.... have you cleaned your keyboard off thoroughly ?

Your relatives. If you house is not gluten free, are they staying out of your peanut butter and jelly if they are using regular bread ? What about kissing ? We got a fruit gift basket with some packaged nuts at Christmas, and I avoided them because they were roasted (see above, I won't touch it ) and I got glutened anyway because somebody decided to snack on them in February and then kissed me without thinking. Gaaaaah.

I had to go with gluten free pet foods for the inside pets because I ended up with 2 pound dogs of a related breed ancestry that both are reactive big time to trace wheat, and if you think you're miserable, wait until you see a really big dog reacting to stealing the cat food and then puking all over the house and scratching himself raw. The other dog just gets really OCD and starts peeing all over. Because I was already sensitive, this was the first thing I tried eliminating after our vet visits and it worked like a charm. They do make wheat free cat foods, but you have to read labels.

____

Another thing that you may want to do is to start taking a gluten free B vitamin complex, and a calcium with vitamin D, because these will help you function a lot better.

Chrisco Apprentice

I know how you feel. I have been gluten free for 6 weeks now and am completely exhausted. I work full time and don't have the option of cutting my hours because I am the only employee in our office. Somedays I hate being at work so much because I think of how unfair it is that I am so sick and have to work full time. However I need the money badly and so I remind myself how lucky I am to have my job and have the income that I do. I just tell myself that the yuckiness I feel is just temporary and in a few weeks I will feel better than I ever have and this won't be an issue. I know it is really hard to hang in there. If you really don't feel that you can work during this time talk to your doctor and ask them for a doctors note. Your employer can't fire you if you miss work and have a doctors note. You are definitely protected by FMLA. I believe you can take a medical leave of up to 12 weeks and not lose your job under FMLA. When I lived in Hawaii I got very sick (before I was diagnosed). I was able to go on TDI (temporary disability insurance) for 6 weeks. Every state is different and this was something that was available in Hawaii. Your state may have something similar. My employer actually assisted me in applying for the TDI and although they were not happy with me taking a leave my job was waiting for me when I felt better and could return to work.

GFLindsey Explorer

I was browsing the forum this afternoon looking to post on exactly this topic! You are NOT alone. I'm happy to read your story, because it helps me feel like someone knows how this feels.

I am currently typing from couch in my apartment while I should be at work. I missed a day yesterday from feeling AWFUL and tried to go in today. After 3 bathroom trips in an hour and breaking out in a cold sweat, I packed up and came home. I have been gluten-free for a little over 2 months. Before diagnosis, I missed a loy of work. Mostly half days and a day or two every month. During all of my testing I was off for several days at a time. Since going gluten-free, I have been doing a little better but still need to take time off (obviously -- this week especially!). I am EXHAUSTED when I am home from work. Cannot peel myself from the couch. Dull long-lasting headaches and my back is constantly in knots. I am so discouraged that I am starting to feel misdiagnosed. I am not sure I can settle for this existence.

I have been very lucky. I am a salaried employee at a college and they are very lenient with my hours. I try and work from home and stay late a few nights when I am feeling good. I will have to pop into the office this weekend to cover my half day today. I am considering going on short-term disability if I have to continue missing work. The pressure of working full-time when feeling this ill is a problem all by itself. It makes me very anxious and stressed, which doesnt help anything EVER.

Anyway, if you feel like your boss is getting resentful or pressuring you, I would approach him/her for a very frank conversation. Can you work from home at all? How long did your doctor say that you needed to work fewer hours? Like above, look into other options like short-term disability or FMLA.

I hope that you find peace soon.

sandsurfgirl Collaborator

I've been gluten-free for about a month. Since the beginning (and still now) I am battling with low energy, muscle weakness, rib discomfort and hours-long headaches (which sometimes become migraines). I am feeling like I am unable to keep up with the work-load at my job, even though the work hours (at my doctor's request) have already been cut back a bit (I am currently working 4 days per week instead of 5, and 6 hour long days instead of 8). I find that on the days I work, I do nothing in the mornings before I work except completely veg. out, and in the evenings I have no energy to do anything except sit around and try to regain some energy for the next day. If I do exert myself during these pre-and post-work hours, I get more pronounced headaches, episodes of greater muscle weakness than usual, and "brain fog". Basically, these days I am living to make it through work. I wasn't at all like this before I was diagnosed with Celiac. Normally I am energetic, and am able to run and work-out 4 days of the week. I know and have largely accepted that it will take time to get back to how I used to be.

My employer is becoming less and less sympathetic with each passing week, because she is faced with staffing shortages and is pressuring me to work more hours. I'm feeling like a wimp, and beginning to feel like others think I am faking all these symptoms (which I'm NOT!)

Has anyone else had to cut back on work during their recovery (intestinal healing, I guess I should say)? If so, how long did you need before you went back to work full-time? How did you approach your doctor about this? How did you approach your boss/supervisor?

At one month gluten free I was really pretty sick. You are still in the healing and withdrawal phase as well as learning, so you may be getting hidden gluten like others have said.

I would look into taking an FMLA leave and short term disability if your doc will support you. You only need a few weeks or a couple of months most likely. Find out your rights and what it all entails before going to the boss. When you explain, talk about the fact that this is a serious autoimmune disorder that causes damage to other organs in the body, etc. It's not just an allergy.

My heart goes out to all of you. I am home with my small kids and homeschooling, so it's been hard to for me in plenty of ways, but I do have bathrooom access when I need it and I can stay in sweats if I have to.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Fozzie Newbie

I could have written your first paragraph! I have been off work for 4 months and hope to return April 1 5 weeks after diagnosis. Fortunately my employer has been empathetic. I am feeling well enough this past week that I actually miss work, before this I have been too fatigued and uncomfortable to entertain the thought.

hang in there

  • 7 months later...
marleyboo2 Newbie

Kudos to you for trying to work. I can't even leave the house. I was actively riding horses and training and then boom one day I could not function literally. I have been gluten free for 7 weeks. I am waiting...and sad.

starrytrekchic Apprentice

Kudos to you for trying to work. I can't even leave the house. I was actively riding horses and training and then boom one day I could not function literally. I have been gluten free for 7 weeks. I am waiting...and sad.

Don't worry, it should pass. I hit the exhaustion patch about 3 months into being gluten free. Couldn't do anything. It went away in 4-6 weeks. It's part of the healing, but you may also want to have your doctor check your vitamin and minerals levels too, just to be sure.

RideAllWays Enthusiast

Kudos to you for trying to work. I can't even leave the house. I was actively riding horses and training and then boom one day I could not function literally. I have been gluten free for 7 weeks. I am waiting...and sad.

I can relate exactly. Took a bit of a break, barely any riding except for trails and after a few months started to feel better. It was mostly the fatigue for me, I had to stop training because I couldn't think fast enough to be effective. If you feel up to it, go to the barn and groom or just sit in the paddocks/stalls/fields or whatever..the smell will make you feel a bit happier and so will the fuzzy noses :) You'll be back in the saddle before long I'm sure, your body is just telling you it needs a rest.

A year and 9 months gluten-free now and I'm back into training. You can do it!

marleyboo2 Newbie

Don't worry, it should pass. I hit the exhaustion patch about 3 months into being gluten free. Couldn't do anything. It went away in 4-6 weeks. It's part of the healing, but you may also want to have your doctor check your vitamin and minerals levels too, just to be sure.

I am anemic for sure and he thinks I have Hashimoto's thyroiditis. The tests are not all back yet. No one (friends and family) believes you can be sick for so long and look as good as I do. I am 35 lbs. thinner than I was 10 months ago. To me I look sick but I am a very good make up artist (I just replaced all my makeup too)

I did learn that many including myself can not eat night shades which is any plant grown under a leaf. Tomatoes and peppers to name a couple. Many things that don't have gluten bother me and it is trial and error for me.

The other thing about headaches is that they are very indicative of detoxing. When you detox you ALWAYS get headaches. Your body is probably detoxing all it couldn't when you were eating gluten. I am praying that is my problem too.

Thanks for all of you who have made me understand that I am not the only who is so sick. May we all find wellness.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      IBS-D vs Celiac

    2. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.