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

I'm New


smead78

Recommended Posts

smead78 Newbie

Hi. I was just diagnosed with celiac disease this past thurs. My doctor told me I had celiac, told me to see a nutritionist, and walked out the door. Everything I have learned, which isn't much, has been on my own. I feel overwhelmed, confused, and stressed out. So much info seems to contradict itself. I need help to sort everything out. Please help me.


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



Celiac.com Sponsor (A8-M):



sa1937 Community Regular

Welcome! You've come to the right place to get your questions answered. A lot of us have been given very little guidance by our doctors so what you experienced is pretty normal. You might want to read, read and read the posts on this forum as a lot of people have been or are in the same boat.

There are a few books that I can think of off hand that are very helpful:

Celiac Disease: A Hidden Epidemic by Dr. Peter Green

Living Gluten-Free for Dummies by Danna Korn

The First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed by Jules Shepard (I wish I had bought this book)

Hope this helps a bit (I'm still on my first cup of coffee) :)

Mummyto3 Contributor

Welcome to the site. I'm new too. My 9yr old daughter was diagnosed 2 weekds ago through a blood test. She's due a biopsy but I'm struggling to get a hold of her dr at the other hospital. We've already had a dieticians appointment come through for us next week (which I'm told could also be biopsy day!). I was tested for celiac disease last Friday as well as hubby. Bowel probs run through my family, grandmother, uncle, aunt, cousin. Three out of them died due to problems. I don't know if any were diagnosed with celiac disease but some seem very much like it.

I've read tonnes on the subject of celiac disease so feel pretty clued up. Heartless of your dr to give you news then walk out! So sorry he/she did that to you. I know this is all pretty scary. It's taken me these 2 weeks to get my head round my daughters diagnosis. Pretty sure mine will be positive too :o(

WinterSong Community Regular

Welcome to the board and to the road to feeling better!

A lot of doctors are like that actually. I have a great doctor, but I still learned everything on my own (I read probably 7 or 8 books). By the time I went in for my biopsy, he said that I didn't need to see a nutritionist because I already knew everything. :lol:

Just take a breath and start at square one. Read a book or two, and any questions you may have, I'm sure a lot of people on this forum are more than willing to help. There's also a great topic called "You're Top Two Pieces of Advice" on here that you should read.

Remember it will get easier and less overwhelming. And you're not alone because this entire online community will be rooting for you. :D

smead78 Newbie

Thank you everyone for your help and words of encouragement. Waiting for my first visit with the nutrionist

angel9165 Newbie

Hi. I was just diagnosed with celiac disease this past thurs. My doctor told me I had celiac, told me to see a nutritionist, and walked out the door. Everything I have learned, which isn't much, has been on my own. I feel overwhelmed, confused, and stressed out. So much info seems to contradict itself. I need help to sort everything out. Please help me.

That's pretty much how it went for me as well. It's been almost a year and I definitely feel better about it now. I have actually taught my GP a few things (and I certainly don't expect her to be a celiac expert, heck...my GI doc isn't) and we seem to be getting it all figured out. I told her how I had researched the affects on your thyroid so we tested me again (sooner than needed) and found we get to lower my dosage. Will see her next month for another test to see if we can lower it some more...with any luck, it's one medicine I can stop taking. She's been great but nothing has kept me more informed than this site and researching the net.

Good luck, Smead! :)

notme Experienced

Hi. I was just diagnosed with celiac disease this past thurs. My doctor told me I had celiac, told me to see a nutritionist, and walked out the door. Everything I have learned, which isn't much, has been on my own. I feel overwhelmed, confused, and stressed out. So much info seems to contradict itself. I need help to sort everything out. Please help me.

hi and welcome :) you are in the right place. go ahead and list specific questions and the people on here can help you! been there and done that (learned everything on my own with the help of these awesome folks) one nurse at my gi's office actually told me to go online ("just google it") i think she was clueless. the best advice has come from here :) also, it's a great place to vent if you need to!


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



Celiac.com Sponsor (A8-M):



notme Experienced

oh, and: ps - by the time i could get an appointment to see a dietician/nutritionist, i didn't need to because i had already gotten coping and nutrition tips and skills from this forum. ka-ching! that's 50 bucks in my pocket! <co-pay $ ;)

cahill Collaborator

Hi , Welcome :)

Read and ask questions,, we were all newbies once :P

Korwyn Explorer

There are a few books that I can think of off hand that are very helpful:Celiac Disease: A Hidden Epidemic by Dr. Peter GreenLiving Gluten-Free for Dummies by Danna KornThe First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed by Jules Shepard (I wish I had bought this book)Hope this helps a bit (I'm still on my first cup of coffee)

Yay for Sylvia's suggestions! :) Living Gluten Free for Dummies saved my sanity. A friend whose husband has celiac disease loaned it to me. I highly recommend all three of those.

My recommended order for reading these would be:

  • Living gluten-free for Dummies
  • The First Year: Celiac Disease
  • celiac disease: A Hidden Epidemic
Harpgirl Explorer

I second (or third?) the Dummies book! I'm reading it right now and it's really helping me to understand how to deal with this (when I'm not at my computer), and not panic about it. I'm looking forward to reading the others too. :)

I also understand that Dangerous Grains is suppose to be good too.

mamabear272 Explorer

As if you need any more testimony about the Dummies book, I HIGHLY recommend it too! I'm still working on it but I've learned sooo much from it. I kept reading the same information online but it didn't make sense to me as far as what gluten does to us that makes us sick. When I read Dummies, it all clicked!

I was actually in the hospital with diverticulitis when I got the call that I had tested + for celiac (I had just seen the GI doc before the diverticulitis flare up) so I haven't seen the GI doc yet for a follow up. I see her next week for a follow up and hope she'll have some info for me. I'm not too worried about it though because I've read so much on it and being here is so very helpful.

I saw my family doc yesterday and he kind of smoothed over the celiac but like I said it doesn't worry me too much because really I probably know more than he does about it. My suggestion is just keep coming here and read anything you can get your hands on about it! We'll all be fine!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - miguel54b replied to Mrs. Cedrone's topic in Related Issues & Disorders
      7

      Canker sores

    2. - miguel54b posted a topic in Related Issues & Disorders
      0

      Body dysmorphia experience

    3. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    4. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,096
    • Most Online (within 30 mins)
      7,748

    SilverMageBull
    Newest Member
    SilverMageBull
    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

    • miguel54b
      I get canker sores one hour after eating Oats, and pimples in my butt. 
    • miguel54b
      Body dysmorphia experience. When I was at the worst of my gluten problem I use to get chronic constipation; I would spend long time sitting on the toilet. One day as I was tired of sitting, I rested my head on my hands and my elbows on my knees, as soon as I felt the pressure of my elbows on my knees the perception of my body changed to that of a tarantula; I visualized and it felt real. The perception went away as soon as I removed the pressure on my knees, I deducted that the pressure of my elbows on the knees caused the sensation, so I repeated the position and the sensation of having the body of a tarantula happened each time. I have not had that experience since then because I started a gluten-free diet short after. I wonder if those people that look distorted to themselves in the mirror could have something similar but with the responsible sensory contacts located on their feet. I want to document this experience because it might help some research or others, it sounds crazy but I feel the right thing to do is to share it.    
    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
×
×
  • 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.