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    Do you have questions about celiac disease or the gluten-free diet?

masterjen

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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?

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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.

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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.

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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.

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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.

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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.

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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

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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.

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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.

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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!

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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.

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