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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    2. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

    3. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

    4. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    5. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
×
×
  • 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.