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

Should I Get More Strict?


Roda

Recommended Posts

Roda Rising Star

Well I finaly got in today for the hida scan. I have my report, but have not talked to my doctor yet. Here it is:

FINDINGS: After the administration of 6.48 mCi of Tc 99 m Choletec multiple views of the abdomen were obtained.

The liver, common bile duct, gallbladder and small bowel are demonstrated in a timely fashion. There does appear to be a small amount of reflux into the stomach after the CCK injection. Time activity curve was created after injection of 1.66 mcg of Kinevac. Gallbladder ejection fraction was somewhat suboptimal at 48%, but still above the 35% threshold required for surgical intervention.

IMPRESSION:

1. MILD REFLUX INTO THE STOMACH; OTHERWISE UNREMARKABLE HIDA SCAN WITH EF OF AROUND 48%.

I have still been having symptoms, heartburn is reduced but the belching and stomach bloating is still very bothersome and taxing. I am still getting the pinching/pulling sensation just right to the epigastric region. I have no idea what the gi doc will say about this. I don't think they will recommend anything surgical. The thing that interested me was the reflux back into the stomach. Has anyone had this? From what little I could find is that bile and duodenal contents reflux back into the stomach causing symptoms. I am wondering what kind of non surgical options there are. More than likely the gallbladder function will worsen over time. At least everyone else will know I was not imagining things. I don't present "typical" with things and the fact that I am not in excruciating pain threw everyone off. It is just a nagging pinching sensation that happens after I eat. I've had it since supper tonight and it is still there.


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



Celiac.com Sponsor (A8-M):



scissorhappygirl Newbie

CC-stamps, envelopes, anything that sticks anything to anything, shared toothpaste tubes, and I'm a hairdresser and most professional products have hydrolyzed wheat protein, so be sure to check, even your hairspray and gel. Many surgical gloves have powder that contains wheat.Floaties for the pool have wheat inside for shipping purposes, and when you blow those up, watch out. Shower liners, anything plastic that gets shipped. Ceramic dishes that are losing the glaze. I would get a seperate microwave. My troops have a little storage cabinet for all of their gluten goods and I keep their microwave and toaster on the top of it. I keep it across the room from the kitchen.

Acid reflux- When you get glutened, it causes your small intestine to swell, which pushes the contents of your stomach up into the esophagus, which in turn causes your stomach to spasm and your esophagus to burn. It takes a while for everything to heal, inclyding your tummy. You just have to be patient. I ended up with 'severe esophagitis' which is when I was diagnosed. I took Aciphex(still do) and it took about six months after being gluten-free for the pain and nausea to subside. I was told to never drink again, and I eat small meals. You might be getting sick after you eat because your meals are too large and it's stretching out your stomach and pushing up a little acid. You need just enough food in there to keep the stomach acid busy but don't just eat one big meal. I sort of graze all day. You'll stay thin this way, too! Hope this helps.

Roda Rising Star

All great ideas. I don't lick envelopes. The shared toothpaste tube is one I had not considered. Don't have pool floaties, but do use powdered gloves at work. However, I am constantly washing my hands because of infection control. I'm at a point that I feel that I have managed the loose ends up with the possible cross contamination issue. Of course there is always room for improvement all the time. I talked to the nurse from the gi's office and she told me that the doctor said my hida scan was normal. Well, I said to her, "could it still be the gallbladder causing symptoms?" She said possibley, since the function was not great, but not bad enough to do anything about. He wants me to have an egd done and I am scheduled for April 6th. I have noticed over the last couple of days that fats (even good fats) seem to trigger my symptoms. I don't eat alot of fried foods, but do like nuts, dairy and olive oil in salad dressing. I guess if I eliminate some more things, I can look at the bright side, and I may loose weight. However I refuse to eat salad without dressing and I hate fat free. This is going to suck until April and then I may still have no more answers than I do now.

twe0708 Community Regular

CC-stamps, envelopes, anything that sticks anything to anything, shared toothpaste tubes, and I'm a hairdresser and most professional products have hydrolyzed wheat protein, so be sure to check, even your hairspray and gel. Many surgical gloves have powder that contains wheat.Floaties for the pool have wheat inside for shipping purposes, and when you blow those up, watch out. Shower liners, anything plastic that gets shipped. Ceramic dishes that are losing the glaze. I would get a seperate microwave. My troops have a little storage cabinet for all of their gluten goods and I keep their microwave and toaster on the top of it. I keep it across the room from the kitchen.

Acid reflux- When you get glutened, it causes your small intestine to swell, which pushes the contents of your stomach up into the esophagus, which in turn causes your stomach to spasm and your esophagus to burn. It takes a while for everything to heal, inclyding your tummy. You just have to be patient. I ended up with 'severe esophagitis' which is when I was diagnosed. I took Aciphex(still do) and it took about six months after being gluten-free for the pain and nausea to subside. I was told to never drink again, and I eat small meals. You might be getting sick after you eat because your meals are too large and it's stretching out your stomach and pushing up a little acid. You need just enough food in there to keep the stomach acid busy but don't just eat one big meal. I sort of graze all day. You'll stay thin this way, too! Hope this helps.

Also, be careful what you eat. I have rice, bean and tomatoes and cheese almost everyday for lunch and do just fine, but I noticed if I had Winto Green Lifesaver after lunch for the breath I would get big time acid reflux.

kareng Grand Master

I have noticed over the last couple of days that fats (even good fats) seem to trigger my symptoms. I don't eat alot of fried foods, but do like nuts, dairy and olive oil in salad dressing. I guess if I eliminate some more things, I can look at the bright side, and I may loose weight. However I refuse to eat salad without dressing and I hate fat free. This is going to suck until April and then I may still have no more answers than I do now.

If you can eat any of these things, they are good instead of salad dressing - lemon or lime juice, salsa, cut up an orange into little bits so you get some in every bite, yogurt, anything juicy.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.