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

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
      130,127
    • Most Online (within 30 mins)
      7,748
    sue j
    Newest Member
    sue j
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      tTg at 234 at 6 month bloodwork

      By trents · Posted

      Well then, I'd say he's making excellent progress. It can take some time for antibody numbers to normalize. Even though new antibodies are no longer being produced, it takes a while for the old ones to be disposed of. Make sure you keep an eye on the alkaline phosphatase levels. It is probably true that is tied to his adolescent growth spurt but it's worth tracking. Thirteen years of elevated liver enzymes was what eventually led to my celiac disease diagnosis. But I was 50 years old by that time and it was my ALT and AST that were mildly elevated all that time, not my alk phos. I just found out last week from an ultrasound that my liver is 20% larger than normal and I'm hoping that is a legacy effect. I have more testing lined up. 
    • CeliacMom79
      tTg at 234 at 6 month bloodwork

      By CeliacMom79 · Posted

      Hi. Sorry, his previous levels were >250 and we do not know how high they were. So yes, "off the chart". By 'detectable' I just meant that at 234 we now actually have a number as a baseline that we can measure future labs against. All his other liver test functions have been normal.  Just the elevated ALP. Thank you.
    • NoGlutenCooties
      gluten-free in Wilmington, DE

      By NoGlutenCooties · Posted

      Hi all I'm looking for a safe place to eat in Wilmington, DE. Any ideas? Thanks Jenny
    • trents
      tTg at 234 at 6 month bloodwork

      By trents · Posted

      Welcome to the forum, @CeliacMom79! Not sure what you mean when you say you are pleased that his ttg levels are now at "detectable levels"? Earlier in your narrative you said they were originally above 250. Was 250 the upper limit of the scale that was used, such that you actually don't know how high they were originally, i.e. "off the charts"?  Were his other liver test functions (ALT, AST) originally elevated?
    • CeliacMom79
      tTg at 234 at 6 month bloodwork

      By CeliacMom79 · Posted

      Hello! This is my first time posting, but I have been so helped by the reading other's posts over the last 6 month. My 16 year old was diagnosed about 6 months ago with Celiac despite He had almost no symptoms aside from occasional loose stools and low weight gain. His tTg was over 250.  He also had anemia with abnormalities to his red blood cells, vD deficiency, elevated ALP and a few other nutritional findings.  He has had a couple of accidental gluten exposures in the last 6 months but overall has (as far as we know) been completely gluten free.  We scrubbed our kitchen down and replaced cookware at the time of diagnosis and our home is completely gluten-free.  We eat out only rarely and then at restaurants we know are aware of cross contamination. He is also not eating oats as a precaution until we get his numbers down. We were told by his Peds GI doc to expect normalization of his labs within 2 years. He just had his 6 month bloodwork and his tTg is now at 234.  All of his abnormal nutritional findings, the anemia and his blood counts have normalized. His ALP is still elevated (which we think may be a normal finding as he's been having a major growth spurt and further tests to check his liver function have been normal). He no longer has loose stools, he feels great and has grown 3 inches and put on about 20lbs in the last 6 months.  This all seems positive. I am happy that we now have his tTg at detectable levels, but I am wondering if anyone has had a level that is still this high 6 months post diagnosis? Thank you so much!  I appreciate this community.  
×
×
  • Create New...