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Feeling Overwhelmed
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I was diagnosed 3 months ago with Celiac and I'm not any better. I'm underweight and malnourished.I work a very physical job with employers who don't care. I struggle everyday with fatigue and joint and muscle pain yet I go to work everyday when alot of people call out alot. Today I asked if I could use 2 vacation days along with my regular 2 days off and they said no that I had to give them a week's notice. It's going to be slow at work then and they could get someone to fill in for me.I've been in tears  all day and I am so tired of this.Nobody understands, that's why I came here looking for support.I feel so alone and like nobody cares.I am so depressed. I take vitamins everyday and have been on a gluten-free diet. I started losing weight 3 years ago the doctor said since I'm older it will take awhile to heal.I come home from work and literally and go to bed until the next day. I spend my days off in bed because I'm too tired to do anything. Thanks for listening and would love any advice you may have.

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I went through the same stuff at work. Fortunately, my husband has a great job, and I was able to come home. It's hard to deal with. I have a degree I'm not using. I feel non-productive at times, but my kids need their mother, and my body simply would not cooperate with me working. People do not understand. They do not understand no gluten, ever. I have Lupus to boot, so it seemed like I was sick all the time. I worked anyway, but the girls started to accuse me of hiding out in the bathroom, so I wouldn't have to work! Really?! I finally had to choose. Me or the job. I chose me.

 

I now homeschool both of our children, and we love it! It took me about 8 months to actually start to tell a difference. A totally gluten free diet is really hard to achieve in the beginning. For example, I continued taking communion at church every Sunday and wondered why I never felt any better! You have to be gluten free, not only to prevent the symptoms but in order to heal. Doctor told me I had so much damage I would never completely heal. Three years later, he was astonished to see microvilli during my EGD. Now he wants me to mentor other patients lol. He says my biopsy will always show Celiac, though.

 

My advice is to either go to the doctor and tell him to order you a couple days off, or give notice for a few days off and muttle through until then. The bad thing about it is that, eventually, no matter how compassionate the boss is, they have to choose the job over your health concerns. I figured that out before I got fired, and quit on my own.

 

Could you work from home? Move to part time?

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I went through the same stuff at work. Fortunately, my husband has a great job, and I was able to come home. It's hard to deal with. I have a degree I'm not using. I feel non-productive at times, but my kids need their mother, and my body simply would not cooperate with me working. People do not understand. They do not understand no gluten, ever. I have Lupus to boot, so it seemed like I was sick all the time. I worked anyway, but the girls started to accuse me of hiding out in the bathroom, so I wouldn't have to work! Really?! I finally had to choose. Me or the job. I chose me.

I now homeschool both of our children, and we love it! It took me about 8 months to actually start to tell a difference. A totally gluten free diet is really hard to achieve in the beginning. For example, I continued taking communion at church every Sunday and wondered why I never felt any better! You have to be gluten free, not only to prevent the symptoms but in order to heal. Doctor told me I had so much damage I would never completely heal. Three years later, he was astonished to see microvilli during my EGD. Now he wants me to mentor other patients lol. He says my biopsy will always show Celiac, though.

My advice is to either go to the doctor and tell him to order you a couple days off, or give notice for a few days off and muttle through until then. The bad thing about it is that, eventually, no matter how compassionate the boss is, they have to choose the job over your health concerns. I figured that out before I got fired, and quit on my own.

Could you work from home? Move to part time?

*wave* fellow homeschooler here!

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It's only been a little over 2 months for me as well. I'm still underweight and I drink Ensure Plus to try to get some weight back on.

Sorry to hear about your work, I'm blessed to be able to stay home and homeschool my children but I do run my own handcrafted jewelry business and sometimes it's hard to get the energy up to work on orders.

It takes time to heal, in the meantime this is a great place to vent :-)

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I'm going to talk o them about it again today and if they say no I'm going to go over there heads because I'm tired of always getting pushed around , around there.My husband has been out of work so I can't quit and I've looked for another job ans their hard to find around here, especially with medical insurance.Thanks for responding. I haven't been able to sleep much during the night and now I'm a nervous wreck.

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There are some who care and understand.  I hope your husband finds work soon and you can slow down as needed.  I hope you will find out what is keeping you down and solve it.  There are so many things to try and  it is overwhelming.

 

D

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I was diagnosed 3 months ago with Celiac and I'm not any better. I'm underweight and malnourished.I work a very physical job with employers who don't care. I struggle everyday with fatigue and joint and muscle pain yet I go to work everyday when alot of people call out alot. Today I asked if I could use 2 vacation days along with my regular 2 days off and they said no that I had to give them a week's notice. It's going to be slow at work then and they could get someone to fill in for me.I've been in tears  all day and I am so tired of this.Nobody understands, that's why I came here looking for support.I feel so alone and like nobody cares.I am so depressed. I take vitamins everyday and have been on a gluten-free diet. I started losing weight 3 years ago the doctor said since I'm older it will take awhile to heal.I come home from work and literally and go to bed until the next day. I spend my days off in bed because I'm too tired to do anything. Thanks for listening and would love any advice you may have.

Hi...you are in a great place for encouragement on this forum!   

 

You are pretty new into your Celiac journey of healing right now & it takes time...especially if you are a little older.  I'm saying that to encourage you not discourage you.  I was 40 when diagnosed....in Fall of 2011.  I had lost 22 lbs in a few weeks & struggled with malnourishment for months...I had to get IV treatments.  Thankfully between this forum & actually knowing a woman that struggled with Celiac after being diagnosed later in life, I was reassured that I needed to be patient(not that I felt patient with how miserable I felt!)

 

I don't think I put any weight on for almost a year...I am now almost 2 years in to my journey & I still struggle to keep the weight on(haha...never thought I would complain about that in my life).  But, I am also so much stronger & better than when I was first diagnosed.  I will be honest that my body is not what it used to be...I keep telling my husband that part of this journey is "learning to live in this new body".  

 

I don't know what to say to help with your work situation...that's tough.  Have you found a local Celiac support group?  That can be encouraging.  I struggled to eat because it hurt & I had no appetite...probably the best thing I did was make fruit smoothies out of bananas, frozen blueberries, frozen peaches or strawberries, vanilla yogurt & PROTEIN powder...it is difficult to get enough protein at the stage you are at.

 

Hang in there...get as much rest as you can...be patient with the time that it takes...hope things turn around at work!

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Hi...you are in a great place for encouragement on this forum!   

 

You are pretty new into your Celiac journey of healing right now & it takes time...especially if you are a little older.  I'm saying that to encourage you not discourage you.  I was 40 when diagnosed....in Fall of 2011.  I had lost 22 lbs in a few weeks & struggled with malnourishment for months...I had to get IV treatments.  Thankfully between this forum & actually knowing a woman that struggled with Celiac after being diagnosed later in life, I was reassured that I needed to be patient(not that I felt patient with how miserable I felt!)

 

I don't think I put any weight on for almost a year...I am now almost 2 years in to my journey & I still struggle to keep the weight on(haha...never thought I would complain about that in my life).  But, I am also so much stronger & better than when I was first diagnosed.  I will be honest that my body is not what it used to be...I keep telling my husband that part of this journey is "learning to live in this new body".  

 

I don't know what to say to help with your work situation...that's tough.  Have you found a local Celiac support group?  That can be encouraging.  I struggled to eat because it hurt & I had no appetite...probably the best thing I did was make fruit smoothies out of bananas, frozen blueberries, frozen peaches or strawberries, vanilla yogurt & PROTEIN powder...it is difficult to get enough protein at the stage you are at.

 

Hang in there...get as much rest as you can...be patient with the time that it takes...hope things turn around at work!

Thank you.I've been thinking about asking my doctor about some kind of IV treatments but didn't know what to ask because even though I am taking lots of supplements if my body can't get the nourishment from food then it doesn't seem to be getting the supplements. At work they said if I can hang in there until next week I can have a few extra days off.At least they know how I'm struggling to do my job and are aware of it.I would like to know more about the iv treatments you were talking about.

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Hi again...The I.V. treatments were for dehydration.  For about a 5 week period of time, I was dehydrating even though I was drinking fluids...I know that logically doesn't make sense, but it is what happened to my body.  Both of my doctors recognized that & had me come into the office & would give me bags of fluid.  It would perk me up so much...I had them a couple times a week for those weeks.

 

The other "staple" in my diet during those first awful months were bananas, scramled eggs & chicken soup.  I still make that chicken soup when I go through a period of upset tummy( I keep it in freezer baggies in my freezer).  It is simple to make...boil a chicken for a few hours in a big pot of water(you can add spices if you like...most McCormick spices are g.f).  Take the chicken out & pull off the meat & bones...use the broth from the chicken as a soup base.  Add cooked rice & carrots(or any other frozen veggie that you like)....very easy, healthy & soothing for the gut.

 

Remember that you are in that beginning stage of "healing" your gut.  Even though "technically" you should be able to eat anything g.f., your gut may not be ready.  Also, other foods may bother you...for example, it is very common not to tolerate dairy...I'm hoping your doctor talked to you about some of that. 

 

It can be overwhelming at first...especially when you are sick on top of trying to figure this all out.  Soon it will all be second nature to you & hopefully soon things will turn around for you. 

 

I hope you get those days off work to rest! 

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Hi Shaky,

 

Welcome to the forum! :)

 

Sometimes people get vitamin injections.  The doctor would need to test your vitamin and mineral levels to see if injections are needed.  They aren't usually needed from what I read here.  But everyone is their own case, and the only way to know is to get tested.  There are sub-lingual versions of B-12 available, which may help.  They are dissolved under the tongue and supposed to be more absorbable.

 

Fatigue can be caused by different things.  It could be low vitamins, low sugar, inflammation, the healing process, thyroid, food reactions, low melatonin (insomnia), caffeine, adrenal fatigue, malabsorption, SIBO, worry, COPD, dwelling too long on complex scientifical or mathmatical problems, fighting off giant beasts, creative angst, etc...

 

Now, it shouldn't be any problem at all to solve your problem right?  :)

 

Actually, low thyroid is somewhat  common among celiacs and women, so it is good to get that checked as well as the vitamins.  The food reactions can be tricky to figure out.  It helps to stick to a simple diet of home cooked meals made from whole foods.  The fewer different foods you eat in a week, the easier it is to identify foods that cause a reaction.  It may be a bit boring, but it is better than being sick, and you will heal faster if your body is not in constant reaction mode.  With celiac it is kind of like learning to eat all over again, with your body refereeing the food choices you make.  Our bodies can be somewhat arbitrary in those food choices/reactions.

 

It can be helpful to get some protein with every meal, and limit sugar and carbs.  Getting lots of sleep helps your body heal too.  Try following the tips below for a month or so to see if they help.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Hi again...The I.V. treatments were for dehydration.  For about a 5 week period of time, I was dehydrating even though I was drinking fluids...I know that logically doesn't make sense, but it is what happened to my body.  Both of my doctors recognized that & had me come into the office & would give me bags of fluid.  It would perk me up so much...I had them a couple times a week for those weeks.

 

The other "staple" in my diet during those first awful months were bananas, scramled eggs & chicken soup.  I still make that chicken soup when I go through a period of upset tummy( I keep it in freezer baggies in my freezer).  It is simple to make...boil a chicken for a few hours in a big pot of water(you can add spices if you like...most McCormick spices are g.f).  Take the chicken out & pull off the meat & bones...use the broth from the chicken as a soup base.  Add cooked rice & carrots(or any other frozen veggie that you like)....very easy, healthy & soothing for the gut.

 

Remember that you are in that beginning stage of "healing" your gut.  Even though "technically" you should be able to eat anything g.f., your gut may not be ready.  Also, other foods may bother you...for example, it is very common not to tolerate dairy...I'm hoping your doctor talked to you about some of that. 

 

It can be overwhelming at first...especially when you are sick on top of trying to figure this all out.  Soon it will all be second nature to you & hopefully soon things will turn around for you. 

 

I hope you get those days off work to rest! 

Thanks for all you info and the chicken soup recipe.I've been eating alot of chicken, fish veggies and alot of bananas and watermelon.

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Hi Shaky,

 

Welcome to the forum! :)

 

Sometimes people get vitamin injections.  The doctor would need to test your vitamin and mineral levels to see if injections are needed.  They aren't usually needed from what I read here.  But everyone is their own case, and the only way to know is to get tested.  There are sub-lingual versions of B-12 available, which may help.  They are dissolved under the tongue and supposed to be more absorbable.

 

Fatigue can be caused by different things.  It could be low vitamins, low sugar, inflammation, the healing process, thyroid, food reactions, low melatonin (insomnia), caffeine, adrenal fatigue, malabsorption, SIBO, worry, COPD, dwelling too long on complex scientifical or mathmatical problems, fighting off giant beasts, creative angst, etc...

 

Now, it shouldn't be any problem at all to solve your problem right?  :)

 

Actually, low thyroid is somewhat  common among celiacs and women, so it is good to get that checked as well as the vitamins.  The food reactions can be tricky to figure out.  It helps to stick to a simple diet of home cooked meals made from whole foods.  The fewer different foods you eat in a week, the easier it is to identify foods that cause a reaction.  It may be a bit boring, but it is better than being sick, and you will heal faster if your body is not in constant reaction mode.  With celiac it is kind of like learning to eat all over again, with your body refereeing the food choices you make.  Our bodies can be somewhat arbitrary in those food choices/reactions.

 

It can be helpful to get some protein with every meal, and limit sugar and carbs.  Getting lots of sleep helps your body heal too.  Try following the tips below for a month or so to see if they help.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Watch out for cross contamination.

Helpful threads:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

Thanks. I've had low thyroid for years and for the past 3 years when I started losing weight and feeling tired they thought it was just my thyroid.I drink at least 2 Boost a day.All the info you gave was very helpful.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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