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

Is It Time For Yet Another Gastroenterologist?

C-Girl

Recommended Posts

C-Girl Contributor
C-Girl
Posted

It's been 16 months since my diagnosis with celiac disease, and I'm still struggling, as are many of us. I'm on my third gastroenterologist. I haven't had any follow up blood work done in a year (I was way down on the celiac panel a year ago) and have no follow up endoscopy in sight. Is this normal?

 

I also have microscopic colitis, and the GI had me on asacol (failure!), Bentyl (FAIL!!), budesonide (great but had side effects), then uceris (Awesome! Perfect!). Now I'm off the uceris because she refused to keep me on it long-term (I was on it for 2 months). My symptoms are all back, and now I have an extra super fun one: I had a massive bleed from my rectum the other day. Boy was THAT a shocker! It was a horror show in the bowl - I probably lost half a pint of blood. It stopped after a couple hours. She called me back, finally, two days later and didn't seem concerned, didn't want to schedule an appointment, just said to call back if it happened again.

 

Should I be expecting a better level of care? Or is it normal to be neglected this way?

 

Just wondering.

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

Corticosteroids such as Uceris can have serious side effects, and the official FDA-approved labeling is for using it for only 8 weeks.

Open Original Shared Link

My gastroenterologist isn't being very helpful either. She will order blood tests when I request them, but my antibody levels have NOT all gone down to the normal range (2-1/2 years), she gives no advice on what to do, and she hasn't referred me to a dietician, although she is part of a celiac center that says its dieticians are experts at finding hidden sources of gluten.

jddh Contributor
jddh
Posted

May I ask what side-effects you encountered with Budesonide? I found it quite tolerable while on it, but noticed some withdrawal effects. (Isn't Uceris the same thing?) I hear tell of folks that stay on Budesonide indefinitely if they need it, but of course that is highly respective to the individual.

 

Sounds like you need consistent long-term therapy for your colitis. Yes, you deserve better care. If you can manage the time and expense, check local ratings and find a GI specialist who will work with you for sustainable results, and perform adequate celiac follow-up. Celiacs NEED that.  I know this isn't news to anyone in America, but I flew from BC, Canada to get to the Mayo and it was 100% worth it.

RMJ Mentor
RMJ
Posted

Uceris is an extended release version of budesonide.

C-Girl Contributor
C-Girl
Posted
  • Author

May I ask what side-effects you encountered with Budesonide? I found it quite tolerable while on it, but noticed some withdrawal effects. (Isn't Uceris the same thing?) I hear tell of folks that stay on Budesonide indefinitely if they need it, but of course that is highly respective to the individual.

 

Sounds like you need consistent long-term therapy for your colitis. Yes, you deserve better care. If you can manage the time and expense, check local ratings and find a GI specialist who will work with you for sustainable results, and perform adequate celiac follow-up. Celiacs NEED that.  I know this isn't news to anyone in America, but I flew from BC, Canada to get to the Mayo and it was 100% worth it.

 

Thanks - the side effects were abnormal menstrual cycles, which I didn't see with Uceris. The budesonide is supposedly absorbed more into the bloodstream than the Uceris formulation, and Uceris also works farther down the GI tract which is where I need it. The PDF that RMJ posted shows very little side effects even after 12 months straight use, so I don't know why my doc wont' let me try it for a little longer. She suggested biologics, which have far more side effects and are only about 50% effective. Why do *I* have to know all this? Shouldn't the expert know this?

icelandgirl Proficient
icelandgirl
Posted

How very frustrating! I'm so sorry you are dealing with this (((hugs))). In my opinion you deserve a better level of care. A toilet bowl full of blood to me is quite concerning. Unfortunately, it does seem like a lot of Dr's don't care enough.

Archived

This topic is now archived and is closed to further replies.

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

  • Member Statistics

    • Total Members
      133,225
    • Most Online (within 30 mins)
      7,748
    Paulyw
    Newest Member
    Paulyw
    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
      Healthy Gluten Free Foods low sugar that you found?

      By xxnonamexx · Posted

      I noticed eating gluten-free or CGF foods have higher sugar and sodium some. No added sugar protein bars I found better with plant fiber. I wanted to know what are you go to besides whole fruits/veggies that you find are healthy for you where you can feel eating normal without hurting yourself or health. I was looking into subscription based like Thrift to see if there is something that is healthier CGF that can make me feel normal. Thanks
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Thankyou because I met up with K B with well known bay area hospital once and she said she knows I don't like to take meds, I said thats incorrect, I have issues.Thats the one that said I was deemed " unruly " when she admitted I was celiac when I asked why am I going through this.
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Watch this space!  😊
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      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
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      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!
×
×
  • 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.