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):

Suspect I Have Celiac, But Negative Home Test. Help!

rhiannon34

Recommended Posts

rhiannon34 Newbie
rhiannon34
Posted

Hello all. I have been suspecting I may have celiac for several years. I have many symptoms, including constipation, lactose intolerance, heart palpitations, tingling hands/feet/mouth after drinking beer, blood in stools, and anemia. I took an at home test about 2 years ago (not from Enterolabs) that came out negative so I dropped thinking I was Celiac for awhile, but I still really have a strong feeling I may be and really need help. I became really concerned about this again recently after changing my vitamins that included iron, feeling terrible for weeks, then feeling tremendously better right away after taking iron supplements. I don't have any money (single mom with 2 kids) so ordering the Enterolab test can't happen, my health insurance from my job will be effective in another 6 weeks, so I plan to see a doctor about it then. Was the at home test that I took accurate? Does anyone here have any suggestions on the best way I can go about getting a good diagnosis?

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

Celiac.com Sponsor (A8-M):


rhiannon34 Newbie
rhiannon34
Posted
  • Author

Wow, have been reading some posts. Could costochondritis also explain the sharp shooting pain I have been getting in my chest when I breathe in since I was a kid??

Skylark Collaborator
Skylark
Posted

If you got the Biocard test it is supposed to be quite good, but all the celiac blood tests do have an estimated 20% false negative. It also only works if you have normal IgA.

If you have insurance kicking in in six weeks, it makes the most sense to keep eating gluten and ask for a full celiac panel. The new deamidated gliadin peptide (DGP) IgA test is one to ask for as not all doctors are ordering it.

If everything comes up negative, you can still try the diet and see if it helps.

rhiannon34 Newbie
rhiannon34
Posted
  • Author

If you got the Biocard test it is supposed to be quite good, but all the celiac blood tests do have an estimated 20% false negative. It also only works if you have normal IgA.

If you have insurance kicking in in six weeks, it makes the most sense to keep eating gluten and ask for a full celiac panel. The new deamidated gliadin peptide (DGP) IgA test is one to ask for as not all doctors are ordering it.

If everything comes up negative, you can still try the diet and see if it helps.

Thanks, yes, it was a biocard test that came up negative. If I'm not celiac then I just don't know what's wrong with me!

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks, yes, it was a biocard test that came up negative. If I'm not celiac then I just don't know what's wrong with me!

I think Skylark gave you some good advice. After your done testing go ahead and give the diet a good strict try. False negatives on testing are not uncommon and you have nothing to lose.

rhiannon34 Newbie
rhiannon34
Posted
  • Author

Thank you, I have been wondering lately though if I should worry with the testing. I know it will end up costing alot, even with insurance because of deductables and all, and I really can't afford it. I know I should at the very lease have the blood in my stool checked out, but even with all these inconclusive tests and false negatives, I may spend the money and still not be sure. I could go ahead with the gluten-free diet and see if I can resolve some of these health problems on my own, and who cares about the Dr. diagnosis, as long as I know. But then again, I was hoping that if it was celiac, I could use the diagnosis to get my kiddos tested, one of which is 16 and has ADHD, and one who is 3 and has constant digestive problems, sick more than he is well, and lactose intolerance. I just don't know, any suggestions? I am really anxious to start feeling better.

ravenwoodglass Mentor
ravenwoodglass
Posted

Could you just ask the ped to test them? In some countries it is part of the routine testing done in children. If needed tell the ped you have celiac symptoms yourself and if you do better on the diet let them know that the diet is helping you.

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

Celiac.com Sponsor (A8-M):


undiagnosed2years Newbie
undiagnosed2years
Posted

Blood in stool is nothing to kid around with. Use your insurance.

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      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
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      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
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      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
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      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
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      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...