Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

7 months later still antibodies present.


Cheerymarie

Recommended Posts

Cheerymarie Apprentice

So aside from the title, I’ve still been experiencing diarrhea, and severe abdominal pain. The gi said she thinks I have ibs d. I’m worried it might be refractory celiacs. I’ve gone 100% gluten-free for these 7 months as I feel like s$#& and want to be well. I’ve changed my kitchen tools, pots, pans etc. I have also changed all my beauty products to gluten-free ones, including lotion, makeup, shampoo etc. I don’t eat gluten and I don’t even eat out or at others houses. I don’t understand why I still have the antibodies.

 

My ONLY idea is maybe a course of antibiotics I took for mouth surgery (military isn’t very nice about my celiacs and wouldn’t change my medicine even if it said “contains wheat” on it so I didn’t Nima test it. Although that was 7 days and I felt the same dying the period I was on those as I did these last 7 months. I have been glutened early into my time so I know how that feels for me so I really don’t think it was the antibiotics.

 

Either way I still feel like crap and was wondering if anyone has some insight. At this point I’m like dang I should just eat gluten it wouldn’t be any different ( I def wouldn’t but I laugh about how it wouldn’t change things for me)   


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
2 hours ago, Cheerymarie said:

So aside from the title, I’ve still been experiencing diarrhea, and severe abdominal pain. The gi said she thinks I have ibs d. I’m worried it might be refractory celiacs. I’ve gone 100% gluten-free for these 7 months as I feel like s$#& and want to be well. I’ve changed my kitchen tools, pots, pans etc. I have also changed all my beauty products to gluten-free ones, including lotion, makeup, shampoo etc. I don’t eat gluten and I don’t even eat out or at others houses. I don’t understand why I still have the antibodies.

 

My ONLY idea is maybe a course of antibiotics I took for mouth surgery (military isn’t very nice about my celiacs and wouldn’t change my medicine even if it said “contains wheat” on it so I didn’t Nima test it. Although that was 7 days and I felt the same dying the period I was on those as I did these last 7 months. I have been glutened early into my time so I know how that feels for me so I really don’t think it was the antibiotics.

 

Either way I still feel like crap and was wondering if anyone has some insight. At this point I’m like dang I should just eat gluten it wouldn’t be any different ( I def wouldn’t but I laugh about how it wouldn’t change things for me)   

Antibodies can be elevated for over a year.  The important thing is to see them in a downward trend.  Know that gliadin antibodies were designed for helping to diagnose celiac disease and not for follow-up care.  The problem is that they are the only “tool in the toolbox” that is not evasive.  That is why doctors use them.  

I had three courses of antibiotics for a tooth extraction due to an old root canal that had gone bad 1/2017.    All my antibodies were up (including thyroid) and I developed chronic hives which always started with abdominal pain.  I eventually went on the Fasano diet for a few months, but still felt bad.  I finally caved and got an endoscopy.  Even though my DGP IgA was still very elevated, my endoscopy revealed healthy villi!  You could see it on the scope camera.  Biopsies confirmed.  But....they found chronic autoimmune gastritis that was not there when I was initially diagnosed.

Your current issues could be related to some hidden gluten or you are still healing (since seven months is still pretty early in the game),   or you could have another issue.  It is way too early to consider refractory or even non-responsive celiac disease in my non-medical opinion.  

tessa25 Rising Star

As long as  your blood test numbers keep going down your doing well. If they are not going down yet you could try a Fasano diet and monitor things yourself by ordering your own blood tests. Your insurance doesn't cover the cost of ordering your own blood tests though. If you're interested in details on how to order your own blood test just let me know. It cost me about $300 a pop. No cash discount there.

ch88 Collaborator

Do you eat oats?

cyclinglady Grand Master

No oats for me.  Because I have  diabetes, I avoid grains as much as possible. 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,079
    • Most Online (within 30 mins)
      7,748

    Kassie S
    Newest Member
    Kassie S
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Could be the Ozampic is masking your expected symptoms.  Like an analgesic masks pain.  Qzampic slows digestion to lower the rate glucose enters the intestine to slow its effect on glucose level.  It seems it might also slow down the gluten entry into the intestine, reducing its trigger level for the antibodies.  Ultimately the damage from gluten is the same, just not as fast so the pain is less.  Sourdough bread has less gluten.  Ozampic siows its entry.
    • Wheatwacked
      You can sell it better if the whole family does gluten free.  If he does have Celiac Diease, it is genetic so either you, your spouse, or both have a 40% chance of also having Celiac.  There are over 200 non classic symptoms also caused by celiac disease not often considered by doctors. Joint pain, muscle pain, muscle cramps, osteoporosis, and allergies for starters.  
    • Wheatwacked
      Hello @MHavoc, thank you for your question and welcome to the clinic. First, has the contstipation abated with the GFD? If your are pursuing further diagnostics you must continue to eat gluten. Each lab has their own reference range for their test, but they indicate an H for high.  Typically anything above 11 is considered positive. Mild chronic inflammation (gastritis) can interfere with intrinsic factor for B12 leading to low B12 causing low MCHC (anemia). So what is causing your gastritis?  A high tTG IgA level generally indicates potential gastrointestinal problems most commonly associated with celiac disease.  Although the biopsy is the Gold Standard for diagnosis, not finding damage in the biopsy does not rule out Celiac Disease. It means they did not find damage where they looked.  The small intestine is over 20 feet long. Many here have been blood positive and biopsy negative, it just delays the diagnosis until you have enough damage to find and fit their diagnostic profile. The Ttg-iga is not only sensitive (90%) but highly specific (98%) and won’t show positive until the damage is severe.  It is estimated that 40% of first degree relatives of diagnosed Celiacs have undiagnosed Celiac Disease, so your sister is a big risk factor in whether you have it. Are You Confused About Your Celiac Disease Lab Results?  This article explains it better and is quite readable. Celiac Disease can cause deficient vitamin D.  Low vitamin D compromises the immune system.  Any other symptoms? liver enzymes?  Recent cold or flue? Celiac Disease and the malabsorption it causes through vitamin and mineral deficiencies can elicit symptoms not usually associated with Celiac Disease. Case in point maybe your gastritis and anemia.  
    • MHavoc
      As with most of the people that come here, I have questions and need perspective/info from this wonderful community.  Some background, started having severe constipation that would not abate even with softners (not really fun to talk about), so I was able to finally get in to see my primary and she scheduled some blood work.  One of things she wanted to test for is Celiac Disease due to my sister having celiac disease since a young child. Here are my test results: MCHC = 31.4 so considered slightly low TISSUE TRANSGLUTAMINASE AB, IGA = 78.8 H So with that result, I was scheduled for an endoscope for confirmation of celiac disease, but I am very confused with the results: Diagnosis 1. Duodenum, biopsy: -No pathologic alteration. 2. Stomach, biopsy: -Mild chronic inflammation with reactive epithelial change -H. pylori not identified on immunostained section. -No intestinal metaplasia or dysplasia I am now scheduled to meet with a GI Specialist from the Celiac team, but that won't be until after the New Year.  I would appreciate thoughts about the biopsy report to understand whether it confirms the celiac disease as was indicated by the blood test results. I have been gluten free for two weeks and it is a very difficult adjustment for me as an older 50+ person.
    • Vozzyv
      Anyone else have intermittent left ear ringing and outer right ear pain? Both seem to happen in the evenings. 
×
×
  • Create New...