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

Do You Think This Is Celiac?

hannahbee

Recommended Posts

hannahbee Newbie
hannahbee
Posted

Sorry for the long post in advance...

 

I've been experiencing bad stomach pain for about 6 months, and other symptoms for about a year. My other symptoms include rib soreness, feverishness, nausea, fatigue/weakness, and headaches. Come to think of it, a few years ago, I had some bad bouts of stomach pain that I think was brought on by, or at least partly, by my anxiety.

 

I notice that the pain comes on/increases when my anxiety increases. Eating also can bring it on. I've kind of noticed that dairy (I was tested a few years ago for lactose intolerance, but results said I'm not) and gluten foods seem to upset me more, but they're in a lot of things, so perhaps not. More recently, in the past few months, the pain seems more often after eating than it ever has been. The pain usually happens mostly at nighttime. 

 

Back in June/July, I had the worse stomach pain I've ever had. It was a tight, crampy, achey feeling. It felt like something was wrapped very tightly around my stomach/waist/ribs. I had blood when I went to the bathroom once, and it helped a little to relieve the pain when I used the bathroom, but not much. I've been having problems with normal bowel movements, both constipation and the other. 

 

That most extreme time, it hurt to move. I felt better resting my head on my knees while I sat at the edge of the bed. It was excruciating... I went to an urgent care place the next day, it still being really bad, but slightly better. They said I could possibly have Crohn's or IBS.

 

It hasn't been that kind of painful again, thankfully, but I've been having more burning pain, rib pain, feverishness, tightness, chest pain, and trouble breathing. I've also had some pain on my lower sides.

 

I recently went to the ER because it hurt to move (I had eaten, then felt the pain on my lower sides, then stomach/rib pain, trouble breathing, dizziness, and nausea). They gave me meds to relax my muscles, took my blood, but wouldn't do an ultra sound or anything.

 

I also just saw my doctor. I mentioned that Celiac runs in my family. She told me a blood test is kind of pointless unless I really wanted to do it. She told me to go gluten free for 2 weeks, and if no results, then I have to see a GI. The earliest appointment is in January...

 

Anyway, I've been gluten free for five days, and so far, not much improvement. I thought it was working at first because I didn't have as much stomach pain, but now it's basically back to normal. After anything I eat, I feel pain. I read somewhere that some people feel way worse after eliminating it at first, and then better. 

 

Any opinions?

Thank you :)

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Sorry for the long post in advance...

 

I've been experiencing bad stomach pain for about 6 months, and other symptoms for about a year. My other symptoms include rib soreness, feverishness, nausea, fatigue/weakness, and headaches. Come to think of it, a few years ago, I had some bad bouts of stomach pain that I think was brought on by, or at least partly, by my anxiety.

 

I notice that the pain comes on/increases when my anxiety increases. Eating also can bring it on. I've kind of noticed that dairy (I was tested a few years ago for lactose intolerance, but results said I'm not) and gluten foods seem to upset me more, but they're in a lot of things, so perhaps not. More recently, in the past few months, the pain seems more often after eating than it ever has been. The pain usually happens mostly at nighttime. 

 

Back in June/July, I had the worse stomach pain I've ever had. It was a tight, crampy, achey feeling. It felt like something was wrapped very tightly around my stomach/waist/ribs. I had blood when I went to the bathroom once, and it helped a little to relieve the pain when I used the bathroom, but not much. I've been having problems with normal bowel movements, both constipation and the other. 

 

That most extreme time, it hurt to move. I felt better resting my head on my knees while I sat at the edge of the bed. It was excruciating... I went to an urgent care place the next day, it still being really bad, but slightly better. They said I could possibly have Crohn's or IBS.

 

It hasn't been that kind of painful again, thankfully, but I've been having more burning pain, rib pain, feverishness, tightness, chest pain, and trouble breathing. I've also had some pain on my lower sides.

 

I recently went to the ER because it hurt to move (I had eaten, then felt the pain on my lower sides, then stomach/rib pain, trouble breathing, dizziness, and nausea). They gave me meds to relax my muscles, took my blood, but wouldn't do an ultra sound or anything.

 

I also just saw my doctor. I mentioned that Celiac runs in my family. She told me a blood test is kind of pointless unless I really wanted to do it. She told me to go gluten free for 2 weeks, and if no results, then I have to see a GI. The earliest appointment is in January...

 

Anyway, I've been gluten free for five days, and so far, not much improvement. I thought it was working at first because I didn't have as much stomach pain, but now it's basically back to normal. After anything I eat, I feel pain. I read somewhere that some people feel way worse after eliminating it at first, and then better. 

 

Any opinions?

Thank you :)

Get tested!  Get an appointment with a GI.  You have to be eating gluten -- so don't stop.  There's a series of blood tests (Celiac Panel).  Search for the tests on this forum or check out the University of Chicago's celiac website for the actual tests.  It's obvious that your doctor is not celiac savvy.

 

If you have celiac disease (I can only speak for that and not an intolerance), it takes weeks, months or years to feel better.  

 

Welcome to the board!  I'm sure others will respond with excellent advice.  

tommysmommy Newbie
tommysmommy
Posted

Wow, yet another doctor giving bad advice, it seems to be an epidemic! If celiac runs in your family & you are having so many possible symptoms - there is every reason to do the test (it's like a $300 blood test for godsake, not a big deal). Telling you to try eating gluten free first is wrong. If you so have celiac, it can easily take a year to start feeling better (some improvements may be obvious at first but it's not an instant solution - you may have nutrient deficiencies that need attention, etc) and also celiac and other illnesses (such as IBS or Crowns or 300 other things) often go hand in hand. You are not alone, many of us need to educate our doctors or seek new ones to be understood. Good luck, follow your instincts & question the doctor!

tommysmommy Newbie
tommysmommy
Posted

I meant Chrohns not Crowns...autospell drives me nuts! PS, you may want to call the GI who will see you in Jan, tell them you have celiac in the family & just went GO - ask them to order the blood work in advance of your appointment - they may not make you wait.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    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

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.