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

Overwhelmed

BabsV

By BabsV
in Coping with Celiac Disease

Recommended Posts

BabsV Enthusiast
BabsV
Posted

So, after 24+ hours of travel time my DD and I made it back to the good ole U S of A! I'm having wicked jetlag issues but am luckily at my mother's place so I don't have to actually do anything unless I choose to.

I just have to squee a bit about all the wondeful shopping options that I've found in the stores...meat that doesn't contain gluten -- why yes, I've probably eaten way too much ham in the last 10 days but boy does it taste good to me! I'm going to try bacon this week -- the first bacon I've had in about a year! Shops that have sweet potats AND yams (can't remember the last time I saw a yam...) and they don't cost $8 per lb?!?! Labels. IN ENGLISH! With allergens clearly marked?!?! And some 'main stream' items now have gluten free labels?!?! (Don't worry, I'm still closely reading all labels...) I feel like I've died and gone to food shopping heaven.

I'm having to pace myself with introducing different foods since my diet was so limited for months. I want to just go crazy and try EVERYTHING but I know that will make me miserable...

It is just so nice to be able to go grocery shopping and feel like I can trust the food quality. And yes, this honeymoon period will undoubtedly wear off but for right now I just wanted to share the joy!

:D

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

Celiac.com Sponsor (A8-M):


Adalaide Mentor
Adalaide
Posted

This is a great reminder about just how good we have it here. I'm happy for you that you're having such a great time. Since I had to recently give up ham and bacon you can just say you're eating my share so you feel less guilty. :D

Darn210 Enthusiast
Darn210
Posted

OK . . . just bring me up to speed so I don't have to go looking in your posting history. Where were you? . . . and is this just a visit or are you back for awhile/good?

Enjoy yourself!!

IrishHeart Veteran
IrishHeart
Posted

Welcome Home, Babs!! :)

When is your Dr. Fasano visit??

BabsV Enthusiast
BabsV
Posted
  • Author

OK . . . just bring me up to speed so I don't have to go looking in your posting history. Where were you? . . . and is this just a visit or are you back for awhile/good?

Enjoy yourself!!

I was in Krakow, Poland. Wheat and barley are huge diet staples and gluten is everywhere in Poland, e.g bacon, it is in bacon?!?!

We're back for what looks like at least 2 years this time around. Then, who knows...I plan to enjoy every single second!!!!

BabsV Enthusiast
BabsV
Posted
  • Author

Welcome Home, Babs!! :)

When is your Dr. Fasano visit??

I'm off to the Center for Celiac Research on July 31st. Spoke with them today to update my phone number and confirm time/date/etc. They are just so friendly and helpful.

Also had 3 enormous vials of blood drawn today at my mother's doctor -- I'll be able to take all the results to MD with me so that they won't have to waste time doing the tests! My mom's doc, a GP, knew more about Celiac than any doctor I ever spoke to in Poland, and was willing to run everything and anything I asked for. She was concerned they'd never wanted to check thyroid or iron or vitamin levels or really anything after my diagnosis. Nice to have someone agree with me that that should have been done!

IrishHeart Veteran
IrishHeart
Posted

My mom's doc, a GP, knew more about Celiac than any doctor I ever spoke to in Poland, and was willing to run everything and anything I asked for. She was concerned they'd never wanted to check thyroid or iron or vitamin levels or really anything after my diagnosis. Nice to have someone agree with me that that should have been done!

I think we all worried you were not getting sufficient care post- DX from what you were telling us. So glad you are home and can investigate what's going on.

Hey, how's the pain level? any better?

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

Celiac.com Sponsor (A8-M):


BabsV Enthusiast
BabsV
Posted
  • Author

I think we all worried you were not getting sufficient care post- DX from what you were telling us. So glad you are home and can investigate what's going on.

Hey, how's the pain level? any better?

Hahahaha. After my visit to the doctor yesterday I think I can safely say I basically was having no real care post-DX!

Pain still present. The amitriptyline allows me to function for the most part. Having more to do helps since I don't have as much time to focus on it. Stress levels have definitely gone down...I still think it might be related to continued exposure to gluten from food in Poland plus perhaps another intolerance. Maybe? We shall see what the experts have to say. The doctor I saw yesterday was also surprised they hadn't done a gallbladder function test to rule that out as a possible problem. And when I mentioned they couldn't do a bone density test because the machine was always 'being serviced' (for 8 flippin' months?!?!) she was speechless. Ah, third world medical care...I am NOT going to miss it!

IrishHeart Veteran
IrishHeart
Posted

I think you will start to progress now that you are home, IMHO.

:)

I'd like to see you off the Amitriptyline. again, IMHO

It causes long term issues you do not need.

(I know: a rheumy made me take it to help me sleep. I used it for 6 months and I gained about 50 lbs. and it made me sluggish in the head)

Be careful when tapering off, okay. Go slowly. It's not pretty.

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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Doctors
      10

      Second chance

      Not yet, been waisting time on western doctors. I went yesterday to my pcp thought we were on same page, I gave him the downplayed confirmed celiac medical note from bay area. As a patient I shouldn't have to Chase my medical, my medical SHOULD stick to us.Im am so exhausted and angery how medical has been, my whole way of thinking of our system is completely...
    2. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Doctors
      10

      Second chance

      @Jmartes71, Have you tried a naturopathic or holistic doctor? Some posters in the past have commented theirs were more helpful than mainstream doctors.
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

      @HectorConvector, Have you tried taking 500 mg of the Thiamine Mononitrate that you have left? Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand. Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency. No harm in trying it. Neuroplastic...
    4. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I...
    5. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,673
    • Most Online (within 30 mins)
      7,748
    Troy Howald
    Newest Member
    Troy Howald
    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

    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Not yet, been waisting time on western doctors. I went yesterday to my pcp thought we were on same page, I gave him the downplayed confirmed celiac medical note from bay area. As a patient I shouldn't have to Chase my medical, my medical SHOULD stick to us.Im am so exhausted and angery how medical has been, my whole way of thinking of our system is completely changed.i wish I can upload my letter from KB 
    • knitty kitty
      Second chance

      By knitty kitty · Posted

      @Jmartes71, Have you tried a naturopathic or holistic doctor?  Some posters in the past have commented theirs were more helpful than mainstream doctors.  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector,  Have you tried taking 500 mg of the Thiamine Mononitrate that you have left?   Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand.    Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency.   No harm in trying it. Neuroplastic changes in the brain may be caused by thiamine deficiency.   These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's. I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says.   Try taking 500 mg Thiamine Mononitrate and look for health changes.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I know lol)  and supplied it with all the clinical evidence I've had from tests etc.... After hours of "discussing" with it and finding research it "concluded" it's a chronic neuroplastic sensitization syndrome but of course said I should only get a proper diagnosis from a  doctor. When I saw the doctor on 9th February because this got worse he looked through all my medical history and the course of the "condition". I didn't tell him I'd used ChatGPT or mention what I thought it is because I still don't really know until I have a formal diagnosis. He came with the same conclusion as ChatGPT. Just thought it was an interesting co-incidence perhaps. As for myself, I'm not forming any conclusions til I can really know exactly what's happening and why and what stops it. Only then can I truly know.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry. I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.
×
×
  • 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.