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

Waiting On Diagnosis, But Meanwhile....


kaseydylan

Recommended Posts

kaseydylan Newbie

Hi all.

 

My name is Kasey and my doctor is concerned about Celiac Disease. I've had a colonsocopy done and have some swelling in my small intestine. I have an Endoscopy scheduled in 2 weeks. Tonight and yesterday after eating, I've had severe abdominal cramping and pain. I double in pain. No position is comfortable. I took Zantac last night and was able to sleep, but tonight it's been 2 hours or more since I took Zantac and I'm still hurting. I called my GI doctor's office and got the answering service. I'm still waiting on the on-call doctor to call me back. Is there anything I can do before the diagnosis and in the mean time for the "discomfort" that google calls this abdominal pain? Thanks. I hope I can get support here because I need it.

 

Kasey  :(


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I am sorry that you are unwell. Keep eating gluten until all testing is complete! Did you have a celiac blood test panel? That is usually the first step before the endoscopy. Here is a list of tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

As far as your pain, can you take an OTC pain medicine? Perhaps a hot water bottle or heating pad?

I encourage you to do more research on

celiac disease. The University of Chicago's celiac website is a great place to start.

Welcome to the forum and let us know how it goes!

nvsmom Community Regular

Welcome to the board.

 

I'm sorry you are having such pain.  It sounds quite extreme.  I had stomach aches after eating too but the pain usually did not last for hours unless I had a lot of bloating.  If the pain seems too out of the ordinary from what you experienced in the past, you may want to keep contacting your gastro, or even try your GP.

 

For pain, I used to take ibuprofin or tylenol to take the edge off.  Wear looser pants - when pant are tight (once the bloat starts) that doesn't help.

 

If possible, try to eat gluten only in the evenings so your whole day isn't wrecked.  If you have never been gluten-free, you can probably get by in these last two weeks with only 1/2 to 1 slice of bread per day, or the equivalent.  Don't overdo it.  At this point, you just need to maintain your intestinal damage as well as the autoimmune response (for blood tests), and I do think getting the blood tests would be a good idea.

 

Good luck. I hope it gets easier.

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. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,436
    • Most Online (within 30 mins)
      7,748

    Vivien Armstrong
    Newest Member
    Vivien Armstrong
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.