Jump to content
  • 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):

Do You Think This Is Celiac?


hannahbee

Recommended Posts

hannahbee Newbie

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

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

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

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.

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

    • Total Members
      134,080
    • Most Online (within 30 mins)
      10,442

    AdrianJ
    Newest Member
    AdrianJ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...