Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Does It Ever Stop

Serielda

Recommended Posts

Serielda Enthusiast
Serielda
Posted

Ok so Wednesday night I had to call out of work to go to the ER. My CT show I have an enlarged spleen and liver. But my enzymes did not show anything too whacked out. But something caused me quite literal knee dropping pain. Last Friday I had to go to the Dr.'s for a case of rhino sinusitis, and was prescribed Flonase, prednisone and amoxicillin. My Dr. Did look into all three to ensure they was safe for me. My question is has anyone here had experience with this? I have been extreme safe and strict on avoiding gluten, but right now I'm terrified, on the other hand today marks my one year anniversary since diagnosis. So I thought I should be a lot better by now. Any words of encouragement is welcome as I am disappointed and flipping out.

Thanks always,

A very sad scared serielda

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

Celiac.com Sponsor (A8-M):


icelandgirl Proficient
icelandgirl
Posted

Aww...I'm so sorry. ((((Hugs))))

I don't have experience with what's going on with you but I understand your frustration. Another celiac and I have a couple of acronyms we use for all of this. WWIEE (when will it ever end) and IAS (it's always something). It definitely does feel like that at times...and when I walked out of my Dr's office with my diagnosis almost 16 months ago I really thought I'd be better quickly.

So, I try to remind myself of the things that have improved. Like I don't have D 10-20 times a day anymore. I'm not getting weaker every day, etc.

But I do get your fear and frustration. Please do vent and share as it may help to get it out.

Hugs again!

ravenwoodglass Mentor
ravenwoodglass
Posted

So sorry you are having these problems. I hope your doctor is following up on the liver and spleen enlargement. I wish I could be more helpful but will keep you in my thoughts. 

((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))

Tigercat17 Enthusiast
Tigercat17
Posted

Ok so Wednesday night I had to call out of work to go to the ER. My CT show I have an enlarged spleen and liver. But my enzymes did not show anything too whacked out. But something caused me quite literal knee dropping pain. Last Friday I had to go to the Dr.'s for a case of rhino sinusitis, and was prescribed Flonase, prednisone and amoxicillin. My Dr. Did look into all three to ensure they was safe for me. My question is has anyone here had experience with this? I have been extreme safe and strict on avoiding gluten, but right now I'm terrified, on the other hand today marks my one year anniversary since diagnosis. So I thought I should be a lot better by now. Any words of encouragement is welcome as I am disappointed and flipping out.

Thanks always,

A very sad scared serielda

Hi Serieda,

 

I'm so sorry you're not feeling good. Sending hugs and prayers to you!! Do you feel like you're getting gluten from the medication? Did you call the pharm companies yourself? I always call personally.. I wouldn't trust anyone to check for me and I have gotten CC from medications before that claim they are gluten free.  :(

 

As for the enlarged spleen and liver, I never had issues with them, but I have had enlarged lymph nodes andd kidneys when I get gluten in my system. Maybe it's the same kind of inflammatory response? I wish I could be more helpful... I would just double check everything especially since you're so strict on the diet. It's sounds like you got glutened by something. I know for me every time I'm sick and have health problems, it's always and I mean always because of gluten sneaking in and I'm very strict and careful..

 

I hope you feel better soon! ((((((((((((((HUGS)))))))))))))))

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. SB04
      - SB04 replied to SB04's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      False tTG3 Test?

      Thanks! I don't think it was a total IGA test, it was called "Array 3X - Wheat/Gluten Proteome Reactivity & Autoimmunity" and it tested a bunch of wheat proteins and transglutaminase for both IgG and IGAs.
    2. trents
      - trents replied to SB04's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      False tTG3 Test?

      Welcome to the forum, @SB04! Let's cut to the chase. Did they run a tTG-IGA and a total IGA? Total IGA goes by many names but it checks for IGA deficiency. If you are IGA deficient, IGA test scores will be artificially low and it can result in false negatives. The tTG-IGA is the centerpiece of celiac disease antibody testing. Dermatitis herpetiformis...
    3. SB04
      - SB04 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      False tTG3 Test?

      Hi all, about a year ago I had some blood tests done through a naturopath because I had constant hives and no idea why. They would go away for a few days with an antihistamine medicine but always come right back. Anyways, she did an igg test (which i now know is terribly unreliable) and it was pointing to gluten sensitivity. there was another test...
    4. knitty kitty
      - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      18

      Does anyone here also have Afib

      I know I'm late to the party, but I thought these articles are very interesting. Doctors don't recognize vitamin deficiency symptoms. Thiamine deficiency is linked to Long haulers syndrome, too. I had palpitations that only resolved with thiamine Vitamin B 1 supplementation. Association of vitamin B1 with cardiovascular diseases...
    5. knitty kitty
      - knitty kitty replied to ohmichael's topic in Super Sensitive People
      16

      Curious if I should quit my job

      @ohmichael, Have you tried contacting your state's Employment Services? There should be job opportunities and training programs especially for previous service members and veterans. Look into trade schools. Some offer training programs which provide scholarships and housing, and possible employment after completion. Some scholarships are funded...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,715
    • Most Online (within 30 mins)
      7,748
    C Weav
    Newest Member
    C Weav
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • SB04
      False tTG3 Test?

      By SB04 · Posted

      Thanks! I don't think it was a total IGA test, it was called "Array 3X - Wheat/Gluten Proteome Reactivity & Autoimmunity" and it tested a bunch of wheat proteins and transglutaminase for both IgG and IGAs.  
    • trents
      False tTG3 Test?

      By trents · Posted

      Welcome to the forum, @SB04! Let's cut to the chase. Did they run a tTG-IGA and a total IGA? Total IGA goes by many names but it checks for IGA deficiency. If you are IGA deficient, IGA test scores will be artificially low and it can result in false negatives. The tTG-IGA is the centerpiece of celiac disease antibody testing.  Dermatitis herpetiformis is the epidermal expression of celiac disease. Most who have dermatitis herpetiformis also have damage happening to the small bowel lining as well but a small percentage do not. But dermatitis herpetiformis has a characteristic appearance to it, with the rash bumps having pustules in the center. It is also accompanied by a very uncomfortable itch. From what you describe, your rash doesn't sound like dermatitis herpetiformis. The IGG antibody tests are not quite as specific for celiac disease as are the IGA tests but they aren't terrible either. This may be helpful:   
    • SB04
      False tTG3 Test?

      By SB04 · Posted

      Hi all, about a year ago I had some blood tests done through a naturopath because I had constant hives and no idea why. They would go away for a few days with an antihistamine medicine but always come right back. Anyways, she did an igg test (which i now know is terribly unreliable) and it was pointing to gluten sensitivity. there was another test too, that tested for wheat iggs, igas and several other things, among which were Transglutaminases. The only one that came up as high for me was the tTG3 igg result, which shows an autoimmune response in the skin, commonly dermatitis herpetiformis in celiac patients. I was told it was gluten causing it but not celiac. Fast forward to now, I still have hives, I've been gluten free (although I have no reation to gluten when I accidentally have it), and I've been doing research to try and figure out what is wrong. I've heard that those initial igg tests are unreliable, and that maybe gluten isn't the issue, but from what I've read it sounds like the Transglutaminase tests are very reliable? I'm wondering if I somehow got a false positive, because I definitely don't have dermatitis herpetiformis or any typical celiac rashes. Has anyone had a similar experience?
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      I know I'm late to the party, but I thought these articles are very interesting.   Doctors don't recognize vitamin deficiency symptoms.   Thiamine deficiency is linked to Long haulers syndrome, too. I had palpitations that only resolved with thiamine Vitamin B 1 supplementation.   Association of vitamin B1 with cardiovascular diseases, all-cause and cardiovascular mortality in US adults https://pmc.ncbi.nlm.nih.gov/articles/PMC10502219/   Vicious cycle of vitamin B1 insufficiency and heart failure in cardiology outpatients https://pmc.ncbi.nlm.nih.gov/articles/PMC11579856/   Micronutrient deficiencies and new-onset atrial fibrillation in a community-based cohort: data from PREVEND https://pmc.ncbi.nlm.nih.gov/articles/PMC11772465/   Spontaneous Recovery of Isolated Advanced Heart Block in Patient with Celiac Disease by Starting a Strict Gluten Free Diet: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC10482138/   The Efficacy of Vitamins in the Prevention and Treatment of Cardiovascular Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC11432297/   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]].   Recovering from Long Covid with Thiamine https://hormonesmatter.com/recovering-from-long-covid-with-thiamine/ https://hormonesmatter.com/covid-19-thiamine-interview-with-dr-derrick-lonsdale/
    • knitty kitty
      Curious if I should quit my job

      By knitty kitty · Posted

      @ohmichael, Have you tried contacting your state's Employment Services?   There should be job opportunities and training programs especially for previous service members and veterans.   Look into trade schools.  Some offer training programs which provide scholarships and housing, and possible employment after completion.  Some scholarships are funded by employers looking for specifically trained employees. Choose a career path in something you enjoy doing.   I agree with @Scott Adams.  Play your cards close to your chest.  Get your ducks in a row before discussing leaving the gluten aisle where you work now.  Managers can and will fire you really easily, like Scott said.   Prayers and Best Wishes sent.  Keep us posted on your progress!
×
×
  • Create New...