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

Furious, confused, and REALLY tired of this.


MissTeaMuse

Recommended Posts

RecoveredCeliac Apprentice
On 2/20/2023 at 11:41 AM, DebJ14 said:

Our son was being treated for pericaditis and lupus when he was a teen.  Because he was on large doses of Plaquenil, NSAIDs, and Prednisone he was prescribed a PPI.  Instead of just a 14 day course as now recommended, he was on it for nearly 2 years.  He was misdiagnosed, so the only drug he actually needed was the steroid for the pericarditis. It was drug induced, not systemic lupus.  Once we knew that, we began the process of weaning him off the drugs under medical supervision.  He ended up with NAFLD, which the gastro pinned on the combo of all those drugs  for such a long time.  Even now almost 25 years later he has horrible gut problems. 

you should sue


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



Celiac.com Sponsor (A8-M):



DebJ14 Enthusiast
19 minutes ago, RecoveredCeliac said:

you should sue

We did!

DebJ14 Enthusiast
On 2/12/2023 at 8:58 AM, Grammy9 said:

Diagnosed 3 years ago by GI. At age 73. Never been sick in my life. You’re right it is totally overwhelming. Especially when you have a spouse that can’t understand it. I have DH reaction. But the gut pain is unreal. Dermatology tests showed allergy to wheat - negative! Sure! Allergists and dermatologists are not always the best source for diagnosing Celiac. Celiac many times comes with lactose intolerance. I tried lactose free milk. Took time for me to realize that I was still reacting to that. Oatly milk is the only one I can tolerate. Added vitamins. Huge improvement. I thought at my age it was time to enjoy eating out more. NOT! Not happy to be cooking at home but healthier. We travel a lot! Always have gluten free snack in my purse. Thought I could leave my kitchen as is. NOT! Convincing my husband was something else. It is overwhelming no doubt. But a good GI and accepting what you need to do to stay healthy will make a big difference. Hang in there. It will get better. 

I have Celiac, dermatitis herpetiformis yet I am not allergic, nor sensitive to wheat!  Celiac and dermatitis herpetiformis is the autoimmune reaction, which is different from an allergic reaction.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      My Journey Continues some notes

    2. - Cecile replied to Cecile's topic in Related Issues & Disorders
      3

      Symptoms

    3. - Jmartes71 posted a topic in Introduce Yourself / Share Stuff
      0

      Not validated

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      4

      New issue

    5. - Jmartes71 replied to chrish42's topic in Doctors
      3

      Doctors and Celiac.com

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    Mboston
    Newest Member
    Mboston
    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

    • xxnonamexx
      I have increased my vitamin intake Vitamin B Complex plus 2 Thiamax, NeuroMag, Benfotiamine with breakfast. I continue reading and watching gluten free items that I eat. Breakfast is Bobs Redmill gluten-free oatmeal with Chobani zero sugar yogurt a banana and blueberries. Lunch since im at a deli gluten-free is hard to come by so I stick with turkey with gluten-free Promise bread. Dinner varies like gluten-free pasta, tacos, chicken, sausage, meat etc. rice or take out from gluten-free places. I have decided to stay away from gluten-free pizza as I feel I felt weird with it unless its store bought frozen. I am going to try to make my own gluten-free bread, Bagels. I have been good with baking gluten-free treats like cookies, muffins. Snacks if its not fruit, veggies I grab a protein bar or chocolate guilty pleasure reeses, hersheys, York PP. I am going to start to use my fitness pal app to track what I eat and note when I feel off to see if I can pinpoint if a trend of a certain gluten-free food is a culprit. I noticed once in a while I feel a little bloated, gassy that I think is from the pizza so I am going to avoid it and continue narrowing it down. I have been doing very well and I have learned even if you think you are doing everything 100% gluten-free eating it can sneak in without you knowing. This year is more traveling which im afraid of but have already looked into gluten-free places in Nashville which they have and back to Aruba I went last year and have the gluten-free places already selected. Most restaurants I have been to have been very helpful with what to stay away from to avoid CC. If a place states they don't have any gluten-free the I stick with a salad or when I took my kids to breakfast as much as I miss the breakfast this place serves I played it safe with yogurt and a fruit bowl so at least my kids were happy to go there again. Local farmers market has great gluten-free items that I treat myself to like different types of breads, baked goods. My journey continues...
    • Cecile
      Thank you Scott for your wonderful info. I will pry my Doctor for more extensive blood testing. I appreciate your time. 
    • Jmartes71
      After waisted time of new care team, yet again EXHAUSTED saw new gi today in Modesto, though all my ailments im not getting any kind of concern of me being celiac and sentive to just about everything since menopause. Dr daid why don't I go see you guys because my blood shows zero for celiac. I told him im glutenfree since 1994 by colonoscopy with biopsy positive celiac sprue by GI.Its RIDICULOUS when im bringing in material from this site of knowledge as well as the autoimmune institute,and  there's zero interest on their part.Medical IS causing me depression.Im view as a disability chaser, IM STILL RECOVERING from being a bus driver that im still healing and having more issues, now I may have multiple sclerosis or meningioma. Ive reached out, wrote letters, NOT feeling well. This is inhumane. 
    • Jmartes71
      I was taking medicine for sibo but it was not agreeing with my stomach at all.Was on gabapentin but it amps me up.I was taking in morning because it wasn't allowing me to sleep.This has always been an issue with medicine and me.Even going to dentist, the good shot that numbs you once, I can't take because it makes my heart beat fast and I  get the shakes.I have to take the crappy stuff and get injected always more than 4 times always.Its infuriating 
    • Jmartes71
      I showed one doctor I went to once because completely clueless of celiac disease and yes that one was connected to a well known hospital and she said oh thats just a bunch of people that think they are celiac coming together. I said um no they have doctors and knowledge behind what is being written. So bay area is Downplaying this site! SADLY 
×
×
  • 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.