Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

1 Year Gluten Free And Still A Score Of 6
0

8 posts in this topic

ARG - any idea's, 12 year old son & 8 year old daughter plus myself have been Dairy & Gluten Free for 1year now. My daughter still has stomach issues and pain AND is still a 6 on the celiac blood test.

 

We are 100% Gluten Free - we just in the last month have started to eat foods with milk in them - but not Dairy products.

 

Any ideas - the GI specialist just stated that she is still getting this in her diet - so we have no clue as to how.

0

Share this post


Link to post
Share on other sites


Ads by Google:

What test and what are the reference ranges? The ones I have taken a 6 would be negative.

0

Share this post


Link to post
Share on other sites

What do you mean by 100% gluten free?  Different celiacs have different levels of sensitivity to gluten.  Some celiacs who had been diagnosed with refractory celiac, or who were still having symptoms on the typical gluten free diet improved when they went on a gluten contamination elimination diet in this study: 

http://www.biomedcentral.com/1471-230X/13/40/abstract

 

The diet is mainly one of unprocessed foods.  This subject is discussed more here: http://celiacdisease.about.com/b/2013/03/04/study-trace-gluten-responsible-for-ongoing-celiac-symptoms.htm

 

I needed to eliminate even some of the foods in the GCED diet in the study.  What helped me figure out what I can eat was keeping a food/symptom journal.

0

Share this post


Link to post
Share on other sites

She takes a TTGIGA and normal range is < 6

I will have to read the studies provided by the other reply before I comment -

 

What test and what are the reference ranges? The ones I have taken a 6 would be negative.

0

Share this post


Link to post
Share on other sites




I would think "accidental" exposure as opposed to another developing disease. Also, some people take longer to get down to "normal". I would examine all your foods, condiments, prep areas, utensils, small appliances, cutting boards and all.  If you do all that and another 6 months goes past with still no improvement, perhaps look into there causes. I know we found a mustard that was part of this issue (I purchased some gluten detecting strips to test products we didn't get good manufacturing info from).  

0

Share this post


Link to post
Share on other sites

Thanks - where did you get the strips? I have only found really expensive ones - $40/3 (i think)

 

Thanks above pricklypear - for the articles,

 

we originaly did not want to freak out and replace all stuff in house - but that is where we are now -

 

I like the celiac elemination diet - we eat pretty healthfully so this shouldn't be too terrible

 

 

I would think "accidental" exposure as opposed to another developing disease. Also, some people take longer to get down to "normal". I would examine all your foods, condiments, prep areas, utensils, small appliances, cutting boards and all.  If you do all that and another 6 months goes past with still no improvement, perhaps look into there causes. I know we found a mustard that was part of this issue (I purchased some gluten detecting strips to test products we didn't get good manufacturing info from).  

0

Share this post


Link to post
Share on other sites

Thanks - where did you get the strips? I have only found really expensive ones - $40/3 (i think)

 

:blink: Yeah. Those are them. We narrowed down what we thought could be the culprit and had 3 that we tested. This was after a lot of calls and emails to companies to decrease what we needed to test. 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,876
    • Total Posts
      919,432
  • Topics

  • Posts

    • Celiac Sensitivity?
      For dining out, check out the website: http://Www.findmeglutenfree.com.  They list restaurants with gluten free menu's and options in your area and there are reviews from other celiacs on there to help you figure out the better, safe places to eat.  Great web site!   Although it is optimal to not dine out at first, reality sometimes gets in the way.  I had booked a trip months before I got really sick and would have lost a lot of money if I did not go.  A month after diagnosis, I flew overseas and ate out for dinner only every night.  I ate plain foods but they were well prepared so still quite good. I never got sick.  I was careful and it worked. Luckily, Europe was way more gluten free knowledgeable than the US at that time and still is.  So, it can be done if you are very careful!
    • Anyone experience brain fog like this?
      Thanks for the reply, melprkr! Feeling like you're still in a swimming pool moving is a good way to put it. It feels kind of like motion sickness, come to think of it, or a really bad hangover. I was curious because my experience of 'brain fog' in the context of thyroid problems feels so different than brain fog caused by gluten, and I couldn't quite figure out how to explain it. Swimming pool comes pretty close, though. Hope you feel better soon as well!
    • Toblerone
      Although, gluten free...chocolate gives me reflux if I eat too much.  I can handle only a little.
    • Anyone experience brain fog like this?
      Brain fog is a common symptom.  I had a hamburger patty from a local restaurant and am suffering the effects.  Sometimes mine is bad and sometimes it is mild.  This one feels mild, provided I am not "glutened" again.  I have the exact same feelings when I am contaminated.  I actually had 2 good days this week to ony have to go back through this again.  The first day is just tired and want to sleep, but as each day goes on it seems like all I can do to concentrate and do anything.  TV is OK but for me just standing up or moving sometimes makes me dizzy.  Luckily I don't have the nausea but even sitting still I feel like I am in a swimming pool moving.  You know kind of like when you were a kid and you got in the pool or went roller skating but then got out and and you still felt like you in the pool or skating?  The anxiety and the depression is the worst.  I am taking things to help with it but it doesn't always help.  Only thing that seems to help sometimes is just going in to my room and laying there and not moving and just going to sleep.   It will pass.  Just be cautious about everything.  I have opted to let my family know that I will bring my OWN food when we have gatherings.  I don't mind being the odd man out because I am already the odd ball.  One thing I have learned and that is people mean well but mistakes happen and we are the ones who have to pay the price.   Hope you feel better soon.
    • gluten intolerance, dairy intolerance and fructose
      Look into The Paleo Approach by Sara Ballentyne, PhD.  Great resource and will probably answer your questions.  I have the same problem. You have to really read labels.  The only coconut milk I can use is an organic canned one.  Others have too many ingredients that are problematic.  For now, stay with meat and vegetables as someone else has recommended.  If rice works for you, great.  If not, winter squash is good.  The diet change is overwhelming at first but then it starts to make sense.  The one good thing about an intolerance versus allergy is the possibility of someday being able to add it back into your diet once your gut has healed.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,913
    • Most Online
      1,763

    Newest Member
    Mamalarge
    Joined