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

Frightened From Upcoming Appointment


dani nero

Recommended Posts

dani nero Community Regular

I'm terrified about the coming appointment. I can't handle eating gluten again and I have a feeling that the doc will request that I eat gluten. I rushed into this diet the moment I found out it was causing the menstrual problems without knowing the consequences.

I'm still detoxing from the previous accident and it's really painful. I can't go through this for another half a year. I won't be able to handle it!

The health system here is not helping me at all either. I got a call from the clinic two mondays ago about my appointment being in the mail, and I'm still waiting for that letter. Every day is another day to sit and worry about them making me poison myself.


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Awww dani, I'm so sorry. It's that old "caught between a rock & a hard place". That's why so many of us are self diagnosed. We can't bear going back. Might as well be asking me to put a bullet in my brains. No way! But each of us has to do what we need to do.

That doesn't mean we can't hold your hand while you wait & worry & wonder.

Go do something special today. Go to some park or museum or somewhere that really turns you on. That will help get your mind off it & help you relax & renew yourself.smile.gif

dani nero Community Regular

Awww dani, I'm so sorry. It's that old "caught between a rock & a hard place". That's why so many of us are self diagnosed. We can't bear going back. Might as well be asking me to put a bullet in my brains. No way! But each of us has to do what we need to do.

That doesn't mean we can't hold your hand while you wait & worry & wonder.

Go do something special today. Go to some park or museum or somewhere that really turns you on. That will help get your mind off it & help you relax & renew yourself.smile.gif

I sadly can't go out. I need to be working as I'm really really really behind on work. Got a deadline next Friday and I haven't done anything yet. I haven't been able to produce at all lately. I just sit and stare at the screen drawing things that a 5 year old would draw better.

Maybe a walk outside like you suggested would help with that though.

Thanks for the comforting squirmingitch.

squirmingitch Veteran

Anytime dani, anytime. We are all here for you.

May I ask what country you are in?

dani nero Community Regular

Anytime dani, anytime. We are all here for you.

May I ask what country you are in?

I live in Sweden

BabsV Enthusiast

*virtual hug*

Wish I could do more -- once you get caught in that worrying loop it is hard to break out of it.

Do something for yourself that will help take your mind off it if at all possible...take a walk, talk to a friend, splurge on something small (my vice was a type of gluten-free lotion that smelled wonderful; just rubbing a bit into my hands helped to relax me, strange I know...), get a massage, whatever it takes!

squirmingitch Veteran

Ahhhhh, Sweden. It's a very pretty country from what I've seen on TV. I would like to visit it in person some day.


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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

If the Dr. wants you to go back on gluten, you tell them how badly it affects you. That should help DX, because improvement on a gluten-free diet is one of the things Dr, Fassano (one of the leading Celiac specialists) uses as a diagnosing factor.

Maybe you could ask for the genetic test? It might help with your DX.

Waiting is just awful isn't it? :(

dani nero Community Regular

Ahhhhh, Sweden. It's a very pretty country from what I've seen on TV. I would like to visit it in person some day.

It is different here but nevertheless also pretty :-) I'm sure you'd enjoy it.

dani nero Community Regular

If the Dr. wants you to go back on gluten, you tell them how badly it affects you. That should help DX, because improvement on a gluten-free diet is one of the things Dr, Fassano (one of the leading Celiac specialists) uses as a diagnosing factor.

Maybe you could ask for the genetic test? It might help with your DX.

Waiting is just awful isn't it? :(

Yes it's always in the back of my head. Perhaps if I weren't so worried about a false negative it would have been a little easier.

The problem is that the doctor probably never read about Dr Fassano or his DX.

dani nero Community Regular

*virtual hug*

Wish I could do more -- once you get caught in that worrying loop it is hard to break out of it.

Do something for yourself that will help take your mind off it if at all possible...take a walk, talk to a friend, splurge on something small (my vice was a type of gluten-free lotion that smelled wonderful; just rubbing a bit into my hands helped to relax me, strange I know...), get a massage, whatever it takes!

Thanks for the hug. I really need them. When my DH comes home he's gonna have to provide me with lots of those.

pricklypear1971 Community Regular

We've all been there, at one time or another.

Just be nice to yourself right now. Work a bit, even if you aren't producing at the level you want...sometimes just doing it will get you rolling. Then take a break...eventually it will click.

Try not to stress about the things you can't do anything about - like your doctor's thought process. Good news is you have choices and you are in control of the situation. No one can MAKE you go back on gluten. It will be your choice.

dani nero Community Regular

We've all been there, at one time or another.

Just be nice to yourself right now. Work a bit, even if you aren't producing at the level you want...sometimes just doing it will get you rolling. Then take a break...eventually it will click.

Try not to stress about the things you can't do anything about - like your doctor's thought process. Good news is you have choices and you are in control of the situation. No one can MAKE you go back on gluten. It will be your choice.

Thank you pricklypear. I'll make my DH pamper me a little extra today :-)

You've all been very helpful every single time I've posted.

squirmingitch Veteran

I'm sure your DH will be delighted to pamper you a little extra today. Don't all men love playing the white knight?smile.gif

Kimbalou Enthusiast

I was watching an episode of House Hunters International and they were in Sweden. Very pretty. My husband is Swedish. Our last name is obviously Swedish..so when I go to the grocery store there's one cashier that started talking to me in Swedish as I left. (they see your last name on the receipt) I politely told him I don't speak Swedish (neither does my husband). So, now I avoid his line because he keeps thinking I speak Swedish! :) Maybe I should learn someday?

Hugs to you!

dani nero Community Regular

I was watching an episode of House Hunters International and they were in Sweden. Very pretty. My husband is Swedish. Our last name is obviously Swedish..so when I go to the grocery store there's one cashier that started talking to me in Swedish as I left. (they see your last name on the receipt) I politely told him I don't speak Swedish (neither does my husband). So, now I avoid his line because he keeps thinking I speak Swedish! :) Maybe I should learn someday?

Hugs to you!

Hahahaha :-D I wonder if he notices you avoid his line.

Swedish is not the easiest language to learn sadly.

Lori2 Contributor

Hahahaha :-D I wonder if he notices you avoid his line.

Swedish is not the easiest language to learn sadly.

I

alicewa Contributor

Have you tried emailing Enterolab www.enterolab.com and doing their tests? I recently ordered Panel E Open Original Shared Link to be sent to New Zealand. They do process international orders but you'd have to locate a courier service that could return the stool samples back within 72 hours. The courier costs can get very expensive.

dani nero Community Regular

I

dani nero Community Regular

Have you tried emailing Enterolab www.enterolab.com and doing their tests? I recently ordered Panel E Open Original Shared Link to be sent to New Zealand. They do process international orders but you'd have to locate a courier service that could return the stool samples back within 72 hours. The courier costs can get very expensive.

It looks a little peculiar but at least it's an option if all else fails :-O

Let us know how your results turn out!

I'm not sure I would want my stool sample back though lol :-) ..J/k!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,593
    • Most Online (within 30 mins)
      7,748

    Michele Roedder
    Newest Member
    Michele Roedder
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • 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.