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

Finally Saw The Gi!


Mommabearof3

Recommended Posts

Mommabearof3 Rookie

Finally saw the GI, who wasn't an MD but PA, but whatever at this point.  We just got home, it's 10 pm, and it was a long day at the hospital for all of us.  

 

She was pretty good, listened to everything I had to say and she didn't really give any opinions, just said lets run everything and see what comes up.  She did specifically mention celiac or bacterial concerns because I had such an extensive surgery last year that involved my intestines being fused to my uterus and I had some heavy duty antibiotics at the time.  So, I have orders to have a lot of blood taken including the celiac panel, stool samples for different bacterial infections and parasites and I have a colonoscopy and endoscope scheduled for Sept 8th in their outpatient center.  That was the earliest they could get me in, plus they have to get the pre-approval from my insurance.  She also gave me a anti-spasm med to try to get the cramping/constant feeling like I have to go to stop. I'll pick that up tomorrow since the pharmacy was closed already when we got back to my town.  She wasn't too concerned about the bleeding, since it was bright red and I had such a violent diarhea attack, she thinks it was more of a case of either busting a internal hemorrhoid or giving myself a small tear down there.  

 

My follow up is scheduled for November 14th, the whole department is pretty much booked solid.  But I have access to my online tests results, etc., so I should have some answers in a few weeks once everything is done.  I'm of course especially interested in the blood work.  Either way, once the endo is done, I'm going gluten free that day.  

 

I'm hoping to get the bloods drawn tomorrow, there is a lab associated with the hospital not too far from me.  I couldn't get them done today because we had my daughter's MRI scheduled right after my appointment and we were there until almost 6pm getting that done.  We should have her MRI results tomorrow.

 

All in all it was a good appointment.  Maybe I'll finally get some answers.  I'm exhausted from the travel, and of course not looking forward to a colonoscopy prep, but if I can finally end this stomach pain it will be well worth it.

 

Liz


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Good. Get that going. Now... You are still eating gluten, right? I'm sorry I can't remember....some days I can't remember my own stuff. Lol

GottaSki Mentor

Finally saw the GI, who wasn't an MD but PA, but whatever at this point.  We just got home, it's 10 pm, and it was a long day at the hospital for all of us.  

 

She was pretty good, listened to everything I had to say and she didn't really give any opinions, just said lets run everything and see what comes up.  She did specifically mention celiac or bacterial concerns because I had such an extensive surgery last year that involved my intestines being fused to my uterus and I had some heavy duty antibiotics at the time.  So, I have orders to have a lot of blood taken including the celiac panel, stool samples for different bacterial infections and parasites and I have a colonoscopy and endoscope scheduled for Sept 8th in their outpatient center.  That was the earliest they could get me in, plus they have to get the pre-approval from my insurance.  She also gave me a anti-spasm med to try to get the cramping/constant feeling like I have to go to stop. I'll pick that up tomorrow since the pharmacy was closed already when we got back to my town.  She wasn't too concerned about the bleeding, since it was bright red and I had such a violent diarhea attack, she thinks it was more of a case of either busting a internal hemorrhoid or giving myself a small tear down there.  

 

My follow up is scheduled for November 14th, the whole department is pretty much booked solid.  But I have access to my online tests results, etc., so I should have some answers in a few weeks once everything is done.  I'm of course especially interested in the blood work.  Either way, once the endo is done, I'm going gluten free that day.  

 

I'm hoping to get the bloods drawn tomorrow, there is a lab associated with the hospital not too far from me.  I couldn't get them done today because we had my daughter's MRI scheduled right after my appointment and we were there until almost 6pm getting that done.  We should have her MRI results tomorrow.

 

All in all it was a good appointment.  Maybe I'll finally get some answers.  I'm exhausted from the travel, and of course not looking forward to a colonoscopy prep, but if I can finally end this stomach pain it will be well worth it.

 

Liz

Frustrating, I know. Really glad things are moving forward for you....post your lab results if you are unsure of them. If you post in this thread, I will see them and try to help or post in a separate thread and I'm sure many others will help.

Until your endoscopy on the 8th make sure to ingest at least a slice of glutenous bread per day...some have found it helpful to do this in the evening....depends on symptoms.

Hang in there :)

Mommabearof3 Rookie

Good. Get that going. Now... You are still eating gluten, right? I'm sorry I can't remember....some days I can't remember my own stuff. Lol

Yes, still having gluten.  The only diet changes I have tried in the past few months was an extremely low fat diet when my GP thought it was my gallbladder giving me trouble.  My symptoms didn't improve and my gallbladder scan came back fine, so I went back to regular fat amounts after only a week of eating that way.  I still had gluten containing foods even during that though.  I eat some type of bread/gluten containing food every day - a bagel or toast or a sandwich on a roll, Italian bread with pasta, etc.

 

Liz

Mommabearof3 Rookie

Frustrating, I know. Really glad things are moving forward for you....post your lab results if you are unsure of them. If you post in this thread, I will see them and try to help or post in a separate thread and I'm sure many others will help.

Until your endoscopy on the 8th make sure to ingest at least a slice of glutenous bread per day...some have found it helpful to do this in the evening....depends on symptoms.

Hang in there :)

I will definitely post them when I get them, especially if I don't understand them!  I'm finding that it doesn't seem to matter when I eat anymore.  I wake up everyday at this point with pain and running to the bathroom and I go to bed in pain almost every night.  The wait is frustrating, but I've made it this long, what's a couple of more weeks right?

 

Liz

nvsmom Community Regular

Good luck with those tests!  I hope they give you some very clear answers! :)

GottaSki Mentor

Right!

Unfortunately, it is important to keep the gluten flowing.

I remember telling my celiac doc I would have no problem removing gluten as soon as he finished testing....apparently he watched many people he diagnosed return to eating gluten.

My whole family as ready and willing to find health from our food.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...