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
 Share

Recommended Posts

RecoveredCeliac Apprentice
RecoveredCeliac
Posted
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
DebJ14
Posted
19 minutes ago, RecoveredCeliac said:

you should sue

We did!

DebJ14 Enthusiast
DebJ14
Posted
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
 Share
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. Greymo
      - Greymo replied to Mary D63's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Violent reaction to gluten after going gluten-free?

      https://celiac.org/glutenexposuremarkers/ yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    2. trents
      - trents replied to mike101020's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      EMA Result

      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal...
    3. trents
      - trents replied to mike101020's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      EMA Result

      Welcome to the celiac.com community, @mike101020! First, what was the reference range for the ttg-iga blood test? Can't tell much from the raw score you gave because different labs use different reference ranges. Second, there are some non celiac medical conditions, some medications and even some non-gluten food proteins that can cause elevated...
    4. Scott Adams
      0

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    5. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Have I got coeliac disease

      Vitamin D status in the UK is even worse than the US. vitamin D is essential for fighting bone loss and dental health and resistance to infection. Mental health and depression can also be affected by vitamin D deficiency. Perhaps low D is the reason that some suffer from multiple autoimmune diseases. In studies, low D is a factor in almost all of the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,162
    • Most Online (within 30 mins)
      7,748
    Greymo
    Newest Member
    Greymo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Greymo
      Violent reaction to gluten after going gluten-free?

      By Greymo · Posted

      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      EMA Result

      By trents · Posted

      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
    • trents
      EMA Result

      By trents · Posted

      Welcome to the celiac.com community, @mike101020! First, what was the reference range for the ttg-iga blood test? Can't tell much from the raw score you gave because different labs use different reference ranges. Second, there are some non celiac medical conditions, some medications and even some non-gluten food proteins that can cause elevated celiac blood antibodies in some individuals. The most likely explanation is celiac disease but it is not quite a slam dunk. The endoscopy/biopsy is considered the gold standard for celiac disease diagnosis and serves as confirmation of elevated blood antibody levels from the blood testing.
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      Vitamin D status in the UK is even worse than the US.  vitamin D is essential for fighting bone loss and dental health and resistance to infection.  Mental health and depression can also be affected by vitamin D deficiency.  Perhaps low D is the reason that some suffer from multiple autoimmune diseases.  In studies, low D is a factor in almost all of the autoimmune diseases that it has been studied in. Even while searching for your diagnosis, testing your 25(OH)D status and improving it my help your general wellness. Vitamin D Deficiency Affects 60% in Britain: How to Fix It?    
    • mike101020
      EMA Result

      By mike101020 · Posted

      Hi, I recently was informed by my doctor that I had scored 9.8 on my ttgl blood test and a follow up EMA test was positive.   I am no waiting for a biopsy but have read online that if your EMA is positive then that pretty much confirms celiac. However is this actually true because if it it is what is the point of the biopsy?   Thanks for any help 
×
×
  • 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.