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

Need Some Help Please


jasonD2

Recommended Posts

jasonD2 Experienced

Hi- not sure if you can help me but I have a question.i just had a stool test and my anti-gluten antibodies were elevated (the value was 21 with 10 being the cut off for positivity on the lower end and 350 being the upper cutoff)- the person who tested me said i should go gluten free for life, thing is do I really need to? the stool tests are more effective for detecting antibodies but with a value only 11 points above what is considered normal, is that cause for a radical dietary change? i just dont wanna go my whole life w/o gluten if its not entirely necessary. I had a blood test for celiacs 5 years ago and it was negative but since then I have had a variety of digestive problems including IBS, constipation, lactose intolerance and food sensitivities. i'm just not sure what I should do - i'd appreciate any advice or feedback.

Thanks,

Russ


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



Celiac.com Sponsor (A8-M):



mommyagain Explorer

around here, we tend to call IBS a symptom, not the cause :) As for going gluten-free, the best thing you can do is give it a try. I would say give the diet an honest try for 6 weeks. Chances are, you'll feel better and "discover" all kinds of symptoms that you had, but didn't really attribute to food. Most people start feeling at least a little better within a few days, if there's a lot of damage to your intestines, it could take longer. As for your levels only being "a little" high, there are a lot of folks on here whose levels were lower than that, but their response to the diet is nothing short of amazing!

If you truly don't believe you have to go gluten-free, nothing any of us say will change your mind. But, before you decide to ignore the advice to go gluten-free, do some reading about what gluten does to the intestines of celiacs. And read about the subsequent illnesses that are common for celiacs who were undiagnosed for a long time.

jasonD2 Experienced

i think i'll give it a try :-) thanks for your help. Do you think i should still go for a biospy? Also I find that when i remove gluten from my diet I get extremely constipated..like i wont go for 4-5 days w/o taking a laxative or Mg. longest i ever stayed on the gluten-free diet was 2 weeks and then i couldnt take it anymore

MNBeth Explorer

I would have the doctor run another celiac panel (blood test.) A lot can change in 5 years, and many people who initiallly tested negative will test positive later (because the condition has progressed, sadly.)

Of coure the blood test is often not conclusive, but it's a simpler, less invasive way to start. But that's just me. ;-)

happygirl Collaborator

If you have further bloodwork/biopsy done, make sure that you continue to eat gluten-don't go gluten free til testing is completed.

Make sure that the bloodwork consists of the five Celiac tests.

Total IgA

AGA Iga

AGA IgG

EMA IgA

tTG IgA

If you have the biopsy, ensure that they take multiple biopsies in multiple places.

gfpaperdoll Rookie

Russ, you need to give up dairy. When you are eating gluten it balances out with the dairy. When you cut out gluten & not dairy you get the constipation. I think it will go away, if you cut out dairy. Also lots of fresh fruit & prunes are good...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,027
    • Most Online (within 30 mins)
      7,748

    EmmaGraceeee
    Newest Member
    EmmaGraceeee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.