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
VydorScope
Posted

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
Jnkmnky
Posted

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
jmfrisch
Posted
  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
ravenwoodglass
Posted
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
nettiebeads
Posted

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
VydorScope
Posted
  • Author

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
Jnkmnky
Posted
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
jmfrisch
Posted

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
KaitiUSA
Posted

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.

Go to topic listing

  • 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. sc'Que?
      - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      1

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

      This is FANTASTIC--especially that they are recognising barley and (potentially) oats as sources of gluten/contamination! Now if only we can get labeling guidelines to clarify "spices" and "natural flavors" for those of us with other severe allergies.
    2. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein...
    3. trents
      - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    4. Seabeemee
      - Seabeemee replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

      Thanks for your reply Trents…most appreciated. I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population? Also, I found what you said about N...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,173
    • Most Online (within 30 mins)
      7,748
    Mel12
    Newest Member
    Mel12
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      What's your daily meals? Protein bars?

      By xxnonamexx · Posted

      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein bar to fill and play it safe.
    • trents
      Labs ? Awaiting in person follow up with my GI

      By trents · Posted

      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Labs ? Awaiting in person follow up with my GI

      By Seabeemee · Posted

      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Yeast extract

      By JoJo0611 · Posted

      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
×
×
  • 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.