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

Does It Ever Stop


Serielda

Recommended Posts

Serielda Enthusiast

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

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

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

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.

  • 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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

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

    • Total Members
      133,220
    • Most Online (within 30 mins)
      7,748

    kimchi1
    Newest Member
    kimchi1
    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

    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.