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

2 Months And Not Any Better..


newinNashville

Recommended Posts

newinNashville Rookie

It has been over two months since my endoscopy revealed celiac disease. I have been on the diet and not doing much better. I still have speratic nausea and difficulty eating most days. I have a lot of back pain when I eat.

My GI doc is a firm believer in Celiac and the associated problems. He ordered a Hida scan to rule out gall bladder problems. My fraction rate was 35% which he said was too high to reccomend surgery. He also noted that several Celiac's have extremely high rates with their gall bladder problems.

He has ordered the capsule endoscoy that takes more pictures. I go in tomorrow at 6:30 am to take the pill and get the equipment for the day. I am beginning to feel like a lab rat with no end in site. I have a trip to Disney world scheduled in JUNE I have to feel better by then. Any ideas?

My do recommended I take more pain meds and nausea meds. I don't want the meds. I want to get to the source of the problem.

Thanks for your insite!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the boards you have found a great place.

First have you cut out dairy products? The villi that are damaged are needed to produce the enzyme that digests milk. It will help you heal faster if drop it for a while then add it back in cautiously.

Another thing that is kind of important at first is to go with only naturally gluten free foods. Things like eggs, fresh fruit and veggies, rice, potatoes, meats, fish and chicken. We do a lot of 'pot' food at my house. Things like chili, soups, stews and such that can be cooked in quantity are good. The less processed the better at first.

Cross contamination from lines in factories or someone double dipping are something you need to watch out for also. Don't forget to check your toiletries etc. and also pet foods, especially if you share a can opener with them.

Many also find a sublingual B12 helpful at first.

I am sure others will have suggestions too. Disney, from what I hear is quite celiac friendly. My DS and DD went there a month ago and had a great time with no problems. I would think positive and read as many posts here as you can handle.

It gets easier and the trade off of the trouble adjusting to this for the good health that comes is so worth it.

MaryJones2 Enthusiast
It has been over two months since my endoscopy revealed celiac disease. I have been on the diet and not doing much better. I still have speratic nausea and difficulty eating most days. I have a lot of back pain when I eat.

My GI doc is a firm believer in Celiac and the associated problems. He ordered a Hida scan to rule out gall bladder problems. My fraction rate was 35% which he said was too high to reccomend surgery. He also noted that several Celiac's have extremely high rates with their gall bladder problems.

He has ordered the capsule endoscoy that takes more pictures. I go in tomorrow at 6:30 am to take the pill and get the equipment for the day. I am beginning to feel like a lab rat with no end in site. I have a trip to Disney world scheduled in JUNE I have to feel better by then. Any ideas?

My do recommended I take more pain meds and nausea meds. I don't want the meds. I want to get to the source of the problem.

Thanks for your insite!

I know from experience that opiates, promethazine and dairy can all cause constipation (which might discomfort you describe). My sides and back did not stop hurting until I cut out dairy. I think the pain was caused by constipation. Is it possible you have something like this going on?

My suggestions are to cut out dairy and try a magnesium supplement for a while and see how that works. Everyone responds differently so all I can tell you is that it worked for me.

Nancym Enthusiast

There's a good article about what to do when you're not getting better.

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. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    2. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Alarming

    4. - Maggieinsc commented on Scott Adams's article in Winter 2026 Issue
      5

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    Yvonne Thomas
    Newest Member
    Yvonne Thomas
    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

    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
    • xxnonamexx
      Thanks for the info. I have been taking the ones you recommended but when I saw this I was curious if it was something else to add to the journey Thank  
    • Jane07
      I used to be able to get the Rivera yougut i havent been able to get it lately. I like getting it did say it did say gluten free. I just looking for a good yogurt that gluten free that i can add some fruit and nuts to any suggestion would be helpful  thanks
×
×
  • 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.