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

Nearing End Of Gluten Challenge....


VydorScope

Recommended Posts

VydorScope Proficient

Welp been eating gluten (posion) daily now since Stepember 10th, and sporadicly in the weeks leading up to that. Been eating 2 slices of whole wheat bread+ 2 servings of Kroger Shredded Maple Bronw Sugar Mini-Wheat daily the whole time. I must say that even if the test comes back negative, Im going gluten-free. I fee as bad now as I did before going on my Low-carb diet years ago and lost that surplus 50 pounds. My visit is schedualed for Nov 20th, but I might bump it up. Reading from this site I found this under the FAQ:

How long must gluten be taken for the serological tests to be meaningful?

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: There is no simple answer to this question as the susceptibility of the patient to developing celiac disease is dependent upon several factors. One factor is the amount of gluten intake. Another is the genetic makeup of the individual. However, we feel that several weeks of gluten intake, especially in doses of 2 gm gluten/day, should result in positive serology in patients with celiac disease.

I should alreay be well passed that by my count! So dunno.....


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



Celiac.com Sponsor (A8-M):



Jnkmnky Collaborator

Good luck with the testing. All of my tests came back neg, but I went gluten-free over the summer. I've had occasional "cheats" when going out, but nothing too major. ANYWAY- Last week, I bought a loaf of french bread... :P my non-celiac kids and I ate it thoroughly buttered. It was so good. I had the WORST brain fog for two days. It started about two days after I ate the bread. It was so crazy. PLUS, I had that horrible endo pain in my lower back again. This hasn't happened anytime we "cheated". I figured it was because we're not actually celiac. I guess it's possible for gluten to hurt anyone's body. Maybe more so if you're gluten free for an extended period of time??? I don't know the answer. I only know I had a major issue concentrating for about two days and the pain was unbearable in my back. I think it was the gluten. I know I can't deal with that kind of brain fog and parent. It's too much. I'm still surprised it was that bad, but I have no other health issues to connect these symptoms with. It had to be due to the gluten I ate. I'm multi-tasking just fine now.

jmfrisch Newbie
  I had the WORST brain fog for two days.  It started about two days after I ate the bread.  It was so crazy.  PLUS, I had that horrible endo pain in my lower back again. 

This is the best way I have ever heard what I get explained. But...after 2 negative blood test, a negative biopsy when I was young, and now.....a negative DNA test, I am at a loss what to do. I have been gluten-free for over 3 years now, and when I go back on gluten, or just eat out, I get migranes, "brain fog", headaches, unbelievable lower back pain so bad I can't sleep at all, irritable etc etc etc. What is it if in ain't celiac :-(

If I start eating bread again I will live a life popping pain killers I think.

Or are the DNA they are looking for just not sufficient....

ravenwoodglass Mentor
Or are the DNA they are looking for just not sufficient....

<{POST_SNAPBACK}>

Think you may have your answer there. Do you feel better on the diet? If you do don't worry too much about what the tests say and stay gluten free.

nettiebeads Apprentice

I agree with Raven- if you feel good, keep eating gluten-free. You're not denying your body of any important nutrients like essential amino acids or anything. Your body is telling you something isn't right when you eat gluten. It's just that the tests aren't sophisticated enough yet to tell what is wrong. Listen to your body and keep it happy!

VydorScope Proficient

Just an update... I ordered the York Labs at home 10min instand celiac disease test. :) Now I jsut pace around (near the toliet) and wiat for it to arrive!

Jnkmnky Collaborator
This is the best way I have ever heard what I get explained. But...after 2 negative blood test, a negative biopsy when I was young, and now.....a negative DNA test, I am at a loss what to do. I have been gluten-free for over 3 years now, and when I go back on gluten, or just eat out, I get migranes, "brain fog", headaches, unbelievable lower back pain so bad I can't sleep at all, irritable etc etc etc. What is it if in ain't celiac :-(

If I start eating bread again I will live a life popping pain killers I think.

Or are the DNA they are looking for just not sufficient....

<{POST_SNAPBACK}>

All I can tell you is I'm relieved I'm not the only one experiencing this. I went gluten-free awhile back because of the extreme lower back pain that was dxed as endometriosis. I figured if no one knew what the hell caused endo and my son has celiac.... it might just help. It did. 100% pain free for the first time in a year+. Then I went back to gluten. Had a good month. Pain returned. I read Dangerous Grains, went gluten-free again. Had bit of gluten here and there with no problem. It was that loaf of french bread that tipped the scales.


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



Celiac.com Sponsor (A8-M):



jmfrisch Newbie

I was the same; couldn't bear the pain in the end. Tried going off coffee as a last attempt (didn't want to go gluten-free) but that didn't help. Doctors told me to drink more water..that didn't help either.

I just with I could get a definite answer on what is going on. I have had all tests possible now and still get all give negative. My father is a very sensitive celiac, by sister has the same symptons as me...I need an answer...just to tell me it isn't all in my head

:(

KaitiUSA Enthusiast

Vydor-Good luck with testing and let us know as soon as you find out something...glad to hear you were at least some better while on the diet.

Jmfrisch-the DNA is pretty good but the only thing is a small percentage of people do not have either of the main genes(DQ2,DQ8) Most have one of those but not all. Also not all of the celiac genes are identified yet. Just listen to your body:)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,025
    • Most Online (within 30 mins)
      7,748

    Amari Love
    Newest Member
    Amari Love
    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.