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

About Done

w8in4dave

By w8in4dave
in Coping with Celiac Disease

Recommended Posts

w8in4dave Community Regular
w8in4dave
Posted

I am so tired of Dr. apts .. Drs. and all the carp that is going on!! I am about ready to tell them to what the ever off!! Really ?? I have a Derm appt 3 months out?? 3 months?? OK well I guess this ugly freckle spots and this other stuff can wait a few months. yupppp no worries my cancer scare can wait! 

 

I am in a big giant funk!! I am tired of Drs and nurses and every other kind of medical person that I have been trying to call or talk to or god forbid make an appt with ..... even a sleep apnea machine thing is being a big fat pain.......... Is there something in the air??? I even try and sit .. settle .. calm .. calm.. you can do this..calm calm .... Ohhh good thing I was in a good mood!!! Arggg!!  So ok I will make a sleeve for my sleep apnea machine my self!! I am so invisible! Ughhhhhhhh !! Just shoot me now!

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

Celiac.com Sponsor (A8-M):


moosemalibu Collaborator
moosemalibu
Posted

Can you be put on the cancellation list to see if you can get in sooner if someone else cancels their appointment before yours?? I know how it is... And it sucks. Took 2 months to see me gi specialist. Hang in there.

SkyBlue4 Apprentice
SkyBlue4
Posted

I'm so sorry. It is getting harder and harder to get in with specialists it seems. It took me 2 months to get in with a GI specialist (after a positive celiac disease panel) and I am still waiting on my endoscopy (an additional 2 month wait). My son has some chronic issues of a different kind that just went south fast and require the involvement of several specialists Every time we're told to see a different doctor, it is another 4-6 week wait to get in. Clearly a waste of precious time. 

 

We all have our moments when we want to run the streets screaming out in frustration. Try to hang in there. We're here for you.

GF Lover Rising Star
GF Lover
Posted

There is a bright side....Your still alive :D

 

November, December and into January are Notoriously difficult to get Dr. appointments quickly....Holidays.  The up-side of the sleep apnea machine?  Keeps you alive during the night.  Make it work for you. 

 

When things are incredibly crazy for me, I use everything in my "tool box" to get through it.  Meditation with Bi-neural beats, music, mindfulness, work on the Chakra's, exercise and lots of talking it out. 

 

Get on the cancellation lists for your appointments.  And last but not least, BREATHE.  You can do this, just a bump in the road.

 

Hang in there.

 

Colleen

dilettantesteph Collaborator
dilettantesteph
Posted

I'm with you.  It sucks.  The worst is when after waiting ages for the appointment you find that the specialist knows less about the condition than the PCP!!!

 

It is still a joy to be alive and be able to feel the sun on your face.  Enjoy what you can and try not to stress too much about the rest.

ItchyAbby Enthusiast
ItchyAbby
Posted

Oh, dear, that is so frustrating. Like everyone else said, make sure you are on the cancellation list. You could also try what I do - I make a total pain in the ass out of myself - nicely, of course. When I was trying to get in to see an Immunodermatologist, I called everyday, sometimes several times a day. It got so that one of the ladies answering the phone got to know me and she actually called me when a last minute cancellation came in. I was kind every time I called, made sure they knew that I was flexible and always said "thank you" while simultaneously letting them know that I was desperate to get in.

 

Hang in there. You are in a rough patch and playing the waiting game. What are some things that you find relaxing and enjoyable that might distract you/occupy your mind? (For me it was reading and sewing - two things that I could get totally absorbed in and help put my discomfort/fear aside, however briefly)

bartfull Rising Star
bartfull
Posted

Just an idea, but if you are thinking those "freckle spots" may be skin cancer, and since we all know that the sooner these things are caught, the better, why not go to the emergency room? I mean, it might BE an emergency if it DOES turn out to be cancer, and if the ER doc thinks it might be, he can probably get you into the dermatologist's sooner.

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

Celiac.com Sponsor (A8-M):


Celtic Queen Explorer
Celtic Queen
Posted

Totally feel your pain. I called in September to make an appointment with an Integrative Medicine Doctor.  The first appointment for a new patient was in April of next year.  Ugh. I'm staying on the list, but there's no way I can wait until April to get all my problems sorted out.

nvsmom Community Regular
nvsmom
Posted

(((HUGS))) Waiting is the worst. Not knowing what you are dealing with is a huge strain... Hang in there.

w8in4dave Community Regular
w8in4dave
Posted
  • Author

TY everyone!! I had a colonoscopy appt. I missed it .. Oppsi I figured ohhh well !! I will just be ok!! Well seems the Doc called in and he wants me to go get a colonoscopy .. hubbs was the one who answered the phone , I was not home... ughhh I don't want this!! I know I need this done .. sighhh Thanks for the huggssszzz arrggggg 

w8in4dave Community Regular
w8in4dave
Posted
  • Author

Just an idea, but if you are thinking those "freckle spots" may be skin cancer, and since we all know that the sooner these things are caught, the better, why not go to the emergency room? I mean, it might BE an emergency if it DOES turn out to be cancer, and if the ER doc thinks it might be, he can probably get you into the dermatologist's sooner.

I have an appt. I should of taken your advice .. my appt is in Jan. pffttt

w8in4dave Community Regular
w8in4dave
Posted
  • Author

There is a bright side....Your still alive :D

 

November, December and into January are Notoriously difficult to get Dr. appointments quickly....Holidays.  The up-side of the sleep apnea machine?  Keeps you alive during the night.  Make it work for you. 

 

When things are incredibly crazy for me, I use everything in my "tool box" to get through it.  Meditation with Bi-neural beats, music, mindfulness, work on the Chakra's, exercise and lots of talking it out. 

 

Get on the cancellation lists for your appointments.  And last but not least, BREATHE.  You can do this, just a bump in the road.

 

Hang in there.

 

Colleen

I love the bright side!! 

GF Lover Rising Star
GF Lover
Posted

You have your "glass half full" people, your "glass half empty" people and then those of us who are happy to have a glass :D  Perspective is everything ! 

w8in4dave Community Regular
w8in4dave
Posted
  • Author

Yes and I am usually a glass half full kinda person!! I am climbing out of this funk! I have to! It is not going to keep me down!

 

The Dr. Office called. Want me to have a Colonoscopy ughhh thought I got out of that one! I guess I should get another appt. 

BelleVie Enthusiast
BelleVie
Posted

When I get to feeling like that, the best thing for me to do, even though it sounds silly, is wait for everyone to leave the house, turn on my favorite dance music, and just dance like crazy for ten or fifteen minutes. It really shakes the dust off and puts me in a more clear state of mind.  :)

w8in4dave Community Regular
w8in4dave
Posted
  • Author

Yea I have a talk with my self :) ...

LauraTX Rising Star
LauraTX
Posted

w8in I feel your pain.  Juggling multiple health conditions, one is always out of control, multiple doctors, any new doctor takes ages to get into, juggling appointments... feeling poorly...

 

You are totally entitled to, and are going to have, crappy emotional days.  I just really try to be grateful for the things I CAN do.  For a while when I first came down with all of my stuff and was doing particularly poorly, all I could think about was what I couldn't do and I really dwelled on it.  I have to force myself to think about what I can do, and I accept I am just not that person able to go 100 miles an hour 24/7 like I used to.  But like today, I patted out two chebe pizza crusts and my hands hurt a little but not searing pain like I used to get.  Yay me!  :)  It is almost like, a constant pep talk with yourself.  Borderline lying to yourself telling yourself you are doing great and feel great, after a while you start to believe it.  Of course when you are at appointments and stuff, that is harder to do.  Every 4 weeks when I get my 5 hour IV immunoglobulin infusion, I freaking dread it. Because it is a reminder that I am not 100% okay.  But I find that taking myself someplace else mentally at other times helps a little bit with all the pressure.

 

I also think comfort foods should be used on bad days :)  My husband will get me a pint of ice cream on the way home from work when I am in certain terrible moods like if something bad happened.  Try to enjoy any little indulgence you can :)

Juliebove Rising Star
Juliebove
Posted

If it makes you feel any better, I had a colonoscopy.  I kept putting it off.  Had heard horror stories about it and also didn't have a ride too and from.  It turned out really not to be bad at all.  I was especially concerned about the prep.  I would advise getting some Depends or store brand similar, just in case.  I didn't quite make it in time to the toilet during the prep but it was certainly not at all like I had been told that it would be.  Then my mom reminded me that I was so used to having tummy trouble 24/7 at times that this was really no different.  At least this time I did have advanced warning.  Heh.

 

I also had what I thought were strange moles on my back that came out of nowhere.  Turns out they were not moles at all but age spots.  And apparently I had a lot of freckle-like age spots too.  Am using Porcelana on those now.  Makes me a tad itchy but they are fading.

w8in4dave Community Regular
w8in4dave
Posted
  • Author

Thanks! I have had one b4 I can do it :) I think I was having a moment! I still have not done my Colonoscopy for Celiac But I am! It will be after the holidays .. But I am sick and tired of Drs. and test and carp! I am so done! I know it is the holidays and stuff. I guess depression is part of it! An I may have a tinge of depression .. amongst other things! Pfftttss! 

1desperateladysaved Proficient
1desperateladysaved
Posted

I think it may be easier to get appointments come January.  My MD said they were available at whatever time I wanted to come last Feb.  But later in the year they were a couple of months out!  At least there is an end date of some kind. Still sigh.....I hope you don't mean your eating gluten still, and waiting for the test?

 

D

w8in4dave Community Regular
w8in4dave
Posted
  • Author

Ohhh no no Diane I am NOT eating Gluten! Lol Noooo way!! They could not pay me to do that!! I wouldn't go back to eating Gluten!! At this point I wouldn't go back to eating Corn! I think the Corn was a big thing for me! I am feeling so much better!! I cannot believe it! I have even been doing dishes after dinner!! I have noticed my energy levels coming up, and my Brain Fog lifting! I am still having sleep problems, but that may be just me! Using a C-pap but still waking up in the middle of the night! Ohh well I think things are going better! Went to Thanksgiving Dinner made some Chicken Salad and ate only that! My Brother in law came up to me with some sausage and said Here Wendy try this... I said Sorry I cannot eat that. :) I had a few people ask me questions about it, And thats fine! I find everyone wants to cook Gluten free for me. I say , No no don't worry about me! I will cook for myself! Then I have to explain the Corn intolerance. But thats ok! I spread the word! Wendy can only cook for herself! Lol 

WestCoastGirl Apprentice
WestCoastGirl
Posted

Okay, listen...I have never been tested for celiac, but I am hypothyroid with every extending difficulty that comes from being so (ugh), and I fully get your frustrations. I feel "done" a lot too. Right now I'm waiting for a lab test slip in the mail (why the hell did they do that? i would have picked it up) and we had a holiday in there...so it may come tomorrow or it may not...and if it comes Monday I have to wait until Tuesday (fasting) to do my tests...aaaaaaaand wait some more for results...THEN wait for the doctor to call me back...in a day or two or three...

 

...and meanwhile I'm...dying.

 

It's like this EVERY time and getting an actual appointment with my doctor? That's a laugh. When i call my doctor for an appointment I have my calendar open to the following month automatically, with my finger on the arrow to go to the month after that as those will be my earliest possibilities.

 

I get it. I really do. And sometimes I feel "done" too but then again what are my options? Just literally die? It makes one feel that doctors just don't care. I think they're just as caught up by, and hand-tied by, the system as we are. They're probably just cold about our suffering now because they've spent so many years knowing they can't do anything about it.

 

It stinks. I know. I get you. Here's to a better day today.

GFinDC Veteran
GFinDC
Posted

Hey Dave-waiter,

 

If you are doing a colonoscopy, may as well get an endoscopy too.  The endoscopy is what is needed for celiac diagnosis.  If is less expensive to have them both done at once, or at least it should be.  Can save another trip and appointment too.  Since you aren't eating gluten, the endoscopy can't be relied on for celiac diagnosis now.  But they could check the condition of your small intestine to see if you are healing.

 

 

kareng Grand Master
kareng
Posted

Thanks! I have had one b4 I can do it :) I think I was having a moment! I still have not done my Colonoscopy for Celiac But I am! It will be after the holidays .. But I am sick and tired of Drs. and test and carp! I am so done! I know it is the holidays and stuff. I guess depression is part of it! An I may have a tinge of depression .. amongst other things! Pfftttss!

But a colonoscopy ( bottom half ( large intestine) isn't for celiac. You need an endoscopy ( top half or small intestine). Also, haven't you been gluten-free for quite a while? You should be eating gluten for a positive endoscopy. It's not a bad idea for people to get a colonoscopy ( it's recommended for over 50 yr olds) though.

w8in4dave Community Regular
w8in4dave
Posted
  • Author

Yea your right!! I am not sure about this! I might have to call and see. Who knows! When I listened to the message again , I think it was just a check up. But when I talked to the Dr. At my last visit he did say the last time I was in they did the small Bowel. So I don't know! I am over 50 maby it is just for a recheck? I swear it seems the right hand doesn't know what the left hand is doing any more. I wonder about Dr's and such!! I will wait a few days before I give them a call. Let the after Holiday stuff settle and then call them. Find out what the dealio is :) 

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    2. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
    3. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal.
    4. Theresa2407
      - Theresa2407 replied to chrish42's topic in Doctors
      4

      Doctors and Celiac.com

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one. We have held yearly conferences with continued education classes. We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott. In those many years we may have had 2 doctors attend. We sent them information, with no response. I talked to...
    5. Scott Adams
      - Scott Adams replied to suek54's topic in Dermatitis Herpetiformis
      4

      Awaiting dermatitis herpetiformis confirmation following biopsy

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,254
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    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

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
    • Scott Adams
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • 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.