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):

New Here With A Couple Of Questions


erniehart

Recommended Posts

erniehart Newbie

Hello all

I have a couple of questions, first I guess i should give some background info. About 4 or 5 years ago I realized I had pretty much chronic diharrea until about a year ago I didnt really think anything of it. I then saw how it was cutting into my life. I had very frequent trips to the bathroom couldnt go out to dinner without getting home and running to the bathroom. I then went to my family doc in april of 2012 and had blood work done that didnt reveal anything. my family doc sent me to a GI doc who did a colonoscopy that didnt show anything. I didnt like the GI doc so I stopped going to him and just left it alone til the summer of this year when I started getting real bad stomach pains. went to the ER and a cat scan showed that the lymphs nodes in my gut were swollen but they didnt know why. I also had a little blood in my stool. After the ER visit I went to my family doc again who sent me for a celiac blood test and to see another GI doc. my family doc read the results and said that they were negative for celiac. the ttg iga test was 1 and the iga total test was 93. I then saw my new GI doc who seems to suspect IBS but is performing an endoscopy on me tomorrow.

 

I have been noticing more that anytime I eat breads and wheat containing foods I get heartburn and also have issues swallowing. I also eat some things that seem to come out all chewed up but not digested.  except for the time my lymph nodes swelled I dont typically have any pain in my gut. I have a varying level of diharrea constantly though.

 

That brings me to my questions. does everybody have painful symptoms. everytime I read someones story about celiac that say they hurt so bad which makes me depressed because I think I have celiac but hear other people with so much pain and whatnot then I think there is no way I could because I dont hurt.

 

Also would you think that my ttg test is even valid because of how low the total IGA is. The range for total IGA is 81 - 480ish, with the range being so wide and my level on the low end of that is the ttg test useful.

 

I guess my last question is is IBS really a medical condition or is it just doctors way of saying we dont know whats wrong with you.


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



Celiac.com Sponsor (A8-M):



w8in4dave Community Regular

You do not have to have pain to have Celiac. Alot of people don't even have the big "D" you don't even have to have symptoms to have Celiac. Another thing is alot of people test negative a few times before they test positive.  It sure sound familiar to me tho. Altho I did have the pain. Besure to read the newbie thread. It gives alot of info. I don't know about the numbers. Someone eles will chime in. I know I was Dx'd with IBS a few years ago. hmmm seems like all that went away with Gluten Free diet!! hahaha .. Wish you the best of luck!! :) 

powerofpositivethinking Community Regular

can't post much because of time, but since you're getting the endoscopy tomorrow...please, please have them take at least 6-8 samples from your small intestines.  For a lot of people, damage can only be seen through biopsy and not the naked eye.  Does anyone have any links to more detailed write-ups about biopsy procedures?  If you had lower total iga, it would be a good idea to get DGP igg and TTG igg run too.  Remember you must currently be consuming gluten for both the biopsy and blood tests.  

 

Good luck tomorrow!

 

PS- a lot of people around here say IBS stands for I Be Stumped.  Makes me laugh every time, and yes, it is just a catch all term because the doctor hasn't discovered the true problem.

 

 

 

 

I guess my last question is is IBS really a medical condition or is it just doctors way of saying we dont know whats wrong with you.

SkyBlue4 Apprentice

PS- a lot of people around here say IBS stands for I Be Stumped.  Makes me laugh every time, and yes, it is just a catch all term because the doctor hasn't discovered the true problem.

 

So true!  :D

 

 

That brings me to my questions. does everybody have painful symptoms. 

 

No.

 

Good luck with your test today!

emilykay405 Rookie

I didn't even think my bathroom habits were abnormal until I started having more problems earlier this year. I just assumed everyone went to the bathroom an hour after eating. Once I started having stomach cramps and issues with blood again, I decided it was time to get it checked out. I've already had a c-scope (which found a pre-cancerous polyp) and endoscope (found Hiatial Hernia but didn't go into my small intestine and no biopsy done). When I realized that the GI didn't do any Celiac testing, I asked my primary and it came back positive. So I'll be back at the GI this week to hopefully get an endo scheduled.

 

That was longer than I expected...but you mentioned heart burn and swallowing. Anytime I eat any gluten I have the same problems. My GERD flares, nausea (It's always fun dry heaving while walking through the office), and it feels like I have food in my esophagus. As far as pain, until I started focusing more on it I didn't realize how much pain I'm in after I eat gluten. It's entirely possible that you have other damage caused by the heartburn, too. That was another one of those things I didn't realize was a big deal.

 

Another red flag with the swallowing...does it feel like your throat is closing up when you eat gluten? That could be an allergy, possibly life threatening. I don't want to scare you, but anaphylaxis is dangerous. Check out this website Open Original Shared Link and if that fits your symptoms while consuming gluten (or anything) find an allergist immediately or talk to your doctor about getting an epipen.

erniehart Newbie

alright just got back from the endoscopy. i guess there was no obvious signs of celiac so I guess I need to wait for the biopsy results. I know he did biopsies of the small intestine i just dont know how many. he seemed to suggest that the esophagitis was causing my problems i just dont understand how. something has to be causing esophagitis, no? he also found a small hiatal hernia.

 

thanks for the support and answering my questions. i will let you all know about the biopsy results. really hoping something come back so i can feel better.

emilykay405 Rookie

Yup..that Hiatal Hernia will cause the swallowing problems. I flipping hate them. Hopefully they will find something. =c)


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



Celiac.com Sponsor (A8-M):



Archived

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

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

    • Total Members
      134,081
    • Most Online (within 30 mins)
      10,442

    Rowan-Noctis
    Newest Member
    Rowan-Noctis
    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...