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

By smead78
in Coping with Celiac Disease

Recommended Posts

smead78 Newbie
smead78
Posted

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
sa1937
Posted

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
Mummyto3
Posted

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
WinterSong
Posted

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
smead78
Posted
  • Author

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

angel9165 Newbie
angel9165
Posted

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
notme
Posted

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
notme
Posted

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
cahill
Posted

Hi , Welcome :)

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

Korwyn Explorer
Korwyn
Posted

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
Harpgirl
Posted

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
mamabear272
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,019
    • Most Online (within 30 mins)
      7,748
    Wilson1984
    Newest Member
    Wilson1984
    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

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.