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jeanzdyn

Gluten free apparently not helping entirely

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I have real problems.  I was diagnosed with Celiac Disease by biopsy in 2011.  I have considered myself to be gluten free for over 4 years, with the unfortunate condition that I am forced to travel for work -almost constantly.  This makes it very difficult to maintain gluten free, when it becomes necessary to eat in restaurants or starve.  An additional complication is the hours I must work, which sometimes mean I am getting up at 3:00am and other times not going to bed until after 11:00pm.    Some of my symptoms have never truly improved, as I am still suffering from fatigue, which was only every moderately better, and is now extreme fatigue.  I have acid stomach, and frequently loose stools.  I started having hot flashes with great frequency about 7 months ago, and an additional symptom of being cold all the time.  Even during a hot flash I have learned that my body temperature is below 97 degrees, as it is nearly 24 hours a day.  My doctor seemed to be heading in a direction of discovery, but when blood tests came back "normal" he abandoned any exploration of my current symptoms and told me that I am depressed and he gave me an antidepressant, which I do not want and will not take. 

An additional symptom that is newer for me is a feeling of weakness.  one day last week I simply shut down almost entirely.  I just collapsed into a chair and stayed there for over an hour.  my boss took notice and I think that he was alarmed.  (I could not just go home, firstly because I was afraid to drive right then, and second because I am forced to travel for my job and I was not anywhere near home. This would also be a primary reason why I would not want to go to an emergency room.)  I have never lost weight from the celiac disease or from being gluten free, almost the opposite --I am hungry too much of the time, despite over-eating. 

 

I am not depressed, I am unhappy because there is still something wrong with me, but I cannot get any of my doctors to listen to me.

I am trying a different doctor tomorrow.  Losing hope fast.

 

Low body temperature?  Thyroid? any other ideas would be appreciated..... losing hope fast.

Edited by jeanzdyn
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Your thyroid should be tested (request a full thyroid panel).  Feeling weak can be a sign of hyperthyoidism and feeling cold can be hypothyroidism and with autoimmune thyroiditis, you can swing from hypo to hyper.  

 You mentioned normal blood tests?   What does that include?  Have you been tested for celiac antibodies as a follow-up?  This would at least exclude celiac disease as a reason for your symptoms or it may confirm that you have been getting gluten into your diet.  

I hope you feel better soon.  

 

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I think you should consider that this job might be part of the issue.  If I only sleep 4 hours a night I would be tired.  Trying to eat at restauruant all the time messes up my system just because it's usually not what I eat at home .  It's usually saltier, more fat, etc.  Hot flashes could be part of a normal hormone fluctuation.  It can start in your thirties and go ......60's? 70's?  

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Given how sick you've been and for how long, I'm very sorry to say that I don't think your poor body can recover unless you give it regular hours and stable food at regular hours.  I know it's difficult to give up your job.  I gave up my career (which I worked very hard for years to obtain) and which I loved dearly.  My plan was never to retire.  I, and all my friends, really believed I'd drop dead of old age while at work.  Nothing would have made me happier.  Life had other plans.  I'm very sorry but your current job is killing you.  It's your job or your life.  Your choice.

I know it stinks.  I am sorry; but I wish somebody would have told me the same.  Please consider my suggestion.  Otherwise, your suffering (as you describe it) will continue.  Please, please just consider your options.  Possible recovery versus getting worse (by your very words).  

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Low body temps are pretty standard with low thyroid.  Mine is still low after using thyroid hormone for years but I feel fine.  My thyroid numbers are good.

Like others have said, you are driving yourself too hard.  Getting that little sleep and traveling while trying to recover from Celiac damage is almost impossible.  I doubt you have something else going on, except your thyroid may be a problem.  But you need to rest more and eat your own food for now.  I know that is stressful when you have to work, I get that.  I went back to work after 1 week of being diagnosed.  I was very underweight and weak BUT I have a sit down job that is not strenuous.  I have worked here for many years and they cut me some slack on work load.  it took me awhile but I did recover nicely.  I could not have gone back to work if I had your type of job. Is there any way you can find another job that would be easier to do while you recover?  I know...that's a tall order in today's world.

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The thing is: I cannot just quit my job.  I have no savings. I have a mortgage, car payment, and other payments.  I really don't know what to do.   This job, it's like indentured servitude --I am not near home enough for job hunting, or for regular doctor appointments.  I know that I need to get out of this situation, because it is definitely no win.  My employer wants me well, but they really do not understand that taking a week off fixes absolutely nothing, and only stresses me out more.

I have made contact with one employment agency in person, and I plan to email another and see if we can get the ball rolling without me actually going into their office, at least for the next 3 weeks....... 

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I am so impressed with you!  I thought you might just curse me out and not return to the site.  You are stronger than you know.  You have more options than you might realize.

Please keep in mind that my only goal here is to try to help you save your life--not to get you to like me.  I cannot imagine that you are happy or comfortable or relaxed living this way.  You are living beyond your means.  It's not your fault.  Society, media, everything seems to convince us we need more than we actually do need.  I assure you that, with planning and some adjustments, you can quit your job.  You can sell your house and your car.  You can rent and get a cheaper car.  It can be done.

I had the benefit of being born into a very poor family.  As a kid, we lived in a chicken coop in Michigan.  On a dirt floor.  With an oil stove.  The chickens were in a matching coop next door.  I knew how to live cheaply.  When I could no longer work, I sold my house and moved to a tiny apartment.  I gave up a very well-paying job that I worked many, many years to obtain.   My current car is a 1997 Honda.  It can be done.  You simply need to make choices about what exactly is more important to you.  You can take a job that pays much less.  You don't really need all the stuff society tells you that you do.  

Nothing is more important than your health.  Nothing.  Nothing.  Nothing.

YOU are what is most important.  YOU are worth it.

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14 hours ago, jeanzdyn said:

The thing is: I cannot just quit my job.  I have no savings. I have a mortgage, car payment, and other payments.  I really don't know what to do.   This job, it's like indentured servitude --I am not near home enough for job hunting, or for regular doctor appointments.  I know that I need to get out of this situation, because it is definitely no win.  My employer wants me well, but they really do not understand that taking a week off fixes absolutely nothing, and only stresses me out more.

I have made contact with one employment agency in person, and I plan to email another and see if we can get the ball rolling without me actually going into their office, at least for the next 3 weeks....... 

I think this is a good approach to solving your problem of employment and recovery.  You can work while recovering but it needs to be a more sedate job with regular hours. Trying to sell your house and car for something more affordable is going to create more stress for you.  I view those things as last resort measures because if you are able to find another job that will enable you to still work and pay your bills, then that will go a long way to ease your stress levels. In future, an emergency fund is really necessary and you need to keep that in your goal box but for now, work on a better job and recovery.  Sleep, good quality food and less stress are your goals. 

Is there a relative that you could live with, short term, and maybe rent your house to cover expenses so that you could keep it until you are doing better?  This is only for short term but it might be something that would give you more options for getting your feet on more solid ground.  Hang in there........you can get through this, it will just take some time.

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10 hours ago, manasota said:

I am so impressed with you!  I thought you might just curse me out and not return to the site.  You are stronger than you know.  You have more options than you might realize.

Please keep in mind that my only goal here is to try to help you save your life--not to get you to like me.  I cannot imagine that you are happy or comfortable or relaxed living this way.  You are living beyond your means.  It's not your fault.  Society, media, everything seems to convince us we need more than we actually do need.  I assure you that, with planning and some adjustments, you can quit your job.  You can sell your house and your car.  You can rent and get a cheaper car.  It can be done.

I had the benefit of being born into a very poor family.  As a kid, we lived in a chicken coop in Michigan.  On a dirt floor.  With an oil stove.  The chickens were in a matching coop next door.  I knew how to live cheaply.  When I could no longer work, I sold my house and moved to a tiny apartment.  I gave up a very well-paying job that I worked many, many years to obtain.   My current car is a 1997 Honda.  It can be done.  You simply need to make choices about what exactly is more important to you.  You can take a job that pays much less.  You don't really need all the stuff society tells you that you do.  

Nothing is more important than your health.  Nothing.  Nothing.  Nothing.

YOU are what is most important.  YOU are worth it.

I already have a used car.... a 2008 Jeep Liberty.... my previous car was not paid off,... I owe too much to be able to fix that particular issue.

As for moving out of my own house --I have too many belongings in it.   There is no way I can transition easily.  Understand that my last 2 moves were major and it was (as always) me, all by myself moving everything that I was able to lift on my own.  There were movers for only the big furniture.   Also, my last move the movers stole things from me, -I have not recovered from that trauma..........

my best thought is  to move it all into a storage unit and walk away from everything else...... I don't know.  I can't really see a good way out of this.  I will just get sicker until I am unable to work at all, because my bosses don't believe that I am sick......."you look fine".  Not only that, I cannot find a doctor who will listen to me and test me for what I ask to be tested for.  

You want it capped off? today is another crappy day that was an ok day, but is now in the crapper.  I had to wait for someone else, before I could begin my evening, so there was 45 minutes of my time wasted, and on top of that (yes there's more)  - there was no hot water when I got in the hotel shower.  the water never got warm.  I had to dry off, get dressed, get a key to another hotel room -a block away, to take a shower.  I am just. plain. done.  If I had my way I would go home and curl up in a ball and stay there forever.

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On 6/6/2016 at 0:10 AM, cyclinglady said:

Your thyroid should be tested (request a full thyroid panel).  Feeling weak can be a sign of hyperthyoidism and feeling cold can be hypothyroidism and with autoimmune thyroiditis, you can swing from hypo to hyper.  

 You mentioned normal blood tests?   What does that include?  Have you been tested for celiac antibodies as a follow-up?  This would at least exclude celiac disease as a reason for your symptoms or it may confirm that you have been getting gluten into your diet.  

I hope you feel better soon.  

 

I tried to request a full thyroid panel.  The doctors won't listen to me.  I have not been tested for celiac antibodies.  I have no idea what the original gastro doctor did in the way of tests, other than the biopsy.  I have no details.  I know that I messed up there.... I don't even know where to go, now, to find a doctor who will help me.  I don't know where to find anyone who will help me at all.

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27 minutes ago, jeanzdyn said:

I tried to request a full thyroid panel.  The doctors won't listen to me.  I have not been tested for celiac antibodies.  I have no idea what the original gastro doctor did in the way of tests, other than the biopsy.  I have no details.  I know that I messed up there.... I don't even know where to go, now, to find a doctor who will help me.  I don't know where to find anyone who will help me at all.

As a diagnosed celiac, you can request celiac antibodies testing as a follow-up.  That's a standard level of care that your GI or GP/PCP can do.  Experts recommend testing at least once a year.  

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

You might be able to go back to your GI to obtain your records.  It's worth a shot!  

 

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21 hours ago, cyclinglady said:

As a diagnosed celiac, you can request celiac antibodies testing as a follow-up.  That's a standard level of care that your GI or GP/PCP can do.  Experts recommend testing at least once a year.  

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

You might be able to go back to your GI to obtain your records.  It's worth a shot!  

 

I will tell them I want the records.  The thing is that I do not like my GI at all.  He disputes my symptoms, says they have nothing to do with Celiac Disease, yet they are on the lists of symptoms I have seen.  Also, if he doesn't think my symptoms are related to Celiac Disease, why doesn't he help me figure this out? or recommend a doctor who can look at more of my symptoms.  

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It sounds like you need to find a new doctor!  I live on the West Coast, but how far are you from Chicago?  Might be worth a trip to the University of Chicago's celiac center.    Just something to consider.  

Edited by cyclinglady

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 Wow, sorry for what you are going through.  I never stopped getting loose stool until I stopped eating out 100%  no such thing as gluten free restaurant.

  I took a three day trip recently.  I brought my own brisket I made and heated in microwave and bought local bananas and fruit.  Hardboiled eggs in a bag from the store are great options, I eat them cold right out of the bag.  Little kids snacks of applesauce also quick easy options.  Gogo brand is good. 

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P.s.  I'm 19 months in And also still have symptoms... I think I may have MCAS.

Common in celiacs and germans, of which I'm both.  Ive been having wine almost daily for the last few months, which is loaded with sulfites.  Fatigue and joint issues have continued.  Try a Claritin see if it helps, it blocks the receptors if that's part of your problem.  

  http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

 

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Jean,

Maybe your boss can find you a job in the office for a while?  It's worth asking maybe?

It's not easy being on constant travel with celiac disease but it can be done.  Your effort to find safe food is going to be harder than most but it is not impossible.  But if you can't manage it you should really think about getting a non-travel job.  Your boss may be willing to work with you on an office position, even if it's temporary.  That would give you some time to look for a local job and also eat a safer diet.

It's really up to you to control your diet and make sure it is safe.  If you can't figure out how to  do that while traveling you owe it to yourself to figure a way out of the travel.

Celiac disease isn't always fun and games.  Not always. :)  I hope you find a way to improve your circumstances.

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