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
      132,127
    • Most Online (within 30 mins)
      7,748

    Steve715
    Newest Member
    Steve715
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Just wanted to add that checking B12 and Vitamin D only is not going to give an accurate picture of vitamin deficiencies.   B12 Cobalamine needs the seven other B vitamins to work properly.   You can have vitamin deficiency symptoms before the B12 blood level changes to show deficiency.  You can have "normal" B12, but have deficiencies in other B vitamins like Thiamine and Niacin, for which there are no accurate tests. Take a B Complex supplement with all the B vitamins.  Take additional Thiamine B 1 in the form Benfotiamine which has been shown to promote intestinal healing.  Thiamine Mononitrate found in most vitamin supplements is not easy for the body to utilize.  What makes thiamine mononitrate not break down on the shelf also makes it hard for the body to absorb and utilize.  Thiamine and Niacin B 3 deficiency symptoms include anxiety, depression and irritability.  The brain uses more Thiamine than other organs.  Take the B Complex and Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and look for health improvements in the following weeks.
    • knitty kitty
      Hello, @rei.b, Ehlers Danlos syndrome and Celiac Disease can occur together in genetically predisposed individuals.  Losing ones gallbladder is common with celiac disease. I'm glad Naltrexone is helping with your pain.  Naltrexone is known to suppress tTg IgA and tTg IgG production, so it's not surprising that only your DGP IgG and DGP IgA are high.   Have you tried the Autoimmune Protocol diet designed by Dr. Sarah Ballantyne, a Celiac herself?  The AIP diet helps lower inflammation and promotes intestinal healing.   The AIP diet is a Paleo diet that eliminates foods that can cause intestinal inflammation until you heal on the inside, then more foods can be added back in.  The low histamine AIP diet will help reduce inflammation further.   Histamine is released as part of the immune response in celiac disease.  Foods also contain various amounts of histamine or provoke histamine release.  Lowering the amount of histamine from foods helps.  The body, with help from B vitamins, can clear histamine, but if more histamine is consumed than can be cleared, you can stay in an inflammatory state for a long time. Cutting out high histamine foods is beneficial.  Omit night shades which contain alkaloids that add to leaky gut syndrome found with celiac disease.  Night shades include tomatoes, peppers including bell peppers, potatoes and eggplants.  Processed foods like sausages and gluten-free processed products are high in histamines.  All Grains are removed from the diet because they are inflammatory and provoke histamine release. Blood tests for deficiencies in B vitamins are notoriously inaccurate.  You can have vitamin deficiency symptoms before blood levels show a deficiency.  Blood levels do not accurately measure the quantity of B vitamins stored inside the cells where they are utilized.  The brain will order stored vitamins to be released from organs into the blood stream to keep the brain and heart supplied while deficiency occurs inside organs, like the gallbladder.  Gall bladder dysfunction is caused by a deficiency in Thiamine Vitamin B 1 and other B vitamins.   The eight essential B vitamins are water soluble and easily lost with diarrhea and constipation, and the malabsorption and inflammation that occurs with celiac disease.  Because they are water soluble, the body can easily excrete any excess B vitamins in urine.  The best way to see if you are deficient is to take a B Complex and Thiamine in the form Benfotiamine and look for health improvements in the following weeks.  Most B Complex supplements contain Thiamine Mononitrate which is not bioavailable.  The body has a difficult time utilizing thiamine mononitrate because it doesn't break down easily.  Benfotiamine has been shown to promote intestinal healing.   Remember your intestines are in a damaged, permeable state.  Treat them tenderly, like you would a baby until they heal.  You wouldn't feed a baby spicy bell peppers and hard to digest corn and nuts.  Change your diet so your intestines can heal.   I use a combination of B12 Cobalamine, B 6 Pyridoxine, and B1 Benfotiamine for pain.  These three B vitamins have analgesic properties.  They relieve pain better than other otc pain relievers. 
    • Mari
    • trents
      Sorry, I think I got you mixed up with another poster.
    • rei.b
      I hadn't been eating gluten free before having the antibody test done. I started eating gluten free after having the test done because the gastro PA told me to eat gluten-free for 6 months. I'm now 3 months in.
×
×
  • 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.