Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

dylannn

Recommended Posts

dylannn Rookie

ok today is officially one week i've been gluten free and i haven't made any noticeable differences in feeling better. my first question is: how long should i wait to expect changes to occur? am i not giving it enough time? prior to going gluten free one of my issues was constipstion, as well as other health issues usually involving an upset stomach, nausea or an uneasy feeling in my stomach. but since going gluten free i have had a bowel movement different from usual. and today it was more loose and diarrhea like and it is very rarely like that. oh and about half way through the week i got a random rash pop up on one ankle???? advice or suggestions?? 


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



Celiac.com Sponsor (A8-M):



Jmg Mentor

What did the doctor say when you asked about testing?

dylannn Rookie
25 minutes ago, Jmg said:

What did the doctor say when you asked about testing?

well i haven't gotten tested because i am still not certain of gluten being the problem so i just wanted to cut it out and see if anything changes before i need to deal with being tested. 

Jmg Mentor
5 minutes ago, dylannn said:

well i haven't gotten tested because i am still not certain of gluten being the problem so i just wanted to cut it out and see if anything changes before i need to deal with being tested. 

Ah, sorry, I'd seen you'd asked previously and hoped you may have take the advice :(

Unfortunately removing gluten prior to testing is one of the classic mistakes that so many of us fall into, myself included! It means that if you notice a difference and then go back for testing you have to reintroduce gluten for a 'challenge' period, which can be much more unpleasant than simply staying on it in the first place and also the chances of a false negative are greater...

I put some info and links together here a little while ago, they may explain it a little better hopefully :)

As for your question, if you've cut out gluten you've got to look at what you've replaced it with. Has the fibre content in your diet changed markedly? Have you removed chances of cross contamination? Are you in a shared kitchen? Are you keeping a food diary?  All these can help in the early stages.

 

Ennis-TX Grand Master
8 minutes ago, dylannn said:

well i haven't gotten tested because i am still not certain of gluten being the problem so i just wanted to cut it out and see if anything changes before i need to deal with being tested. 

Funny thing is celiac is one backassward disease, you have to be on gluten for 12 weeks for it to show up in your blood testing, and 2 weeks for it to show up in the follow up test that involves a endoscope and biopsies. FIRST get the blood test done before stopping gluten, it is a simple blood test. Ask your doctor for a FULL celiac blood panel, feel free to post your results here for help interpreting them. But for the love of god please get tested before trying the diet. Even if you test negative you can go gluten free afterward and see how you feel then. Cause once you go gluten free going back on gluten will really mess with your system and in most cases the gluten challenge is a living hell if you have been off it for a while.

And no offense but gluten is really hard to eliminate 100% from your diet there is cross contamination issues everywhere, you have to really dedicate yourself to it and clean out the whole house and kitchen. When you start the diet we suggesting looking at several articles like hte newbie 101 etc. about what you will have to do. Like new condiment jars, throwing away scratched dishes, pots, pans, getting new ones, etc. Gluten is a protein smaller then a germ, your body reacts to it with celiac disease, If you can not clean it like blood where a CSI tech can not find it, toss it.

 

dylannn Rookie

so if i have been gluten free for a week will reintroducing it suck really bad???? i'm working a lot so i don't have time to waste feeling. sick ? @Ennis_TX

Ennis-TX Grand Master

You have only been off it for a week, and as mentioned unless your did a clean out and changed 100% over I doubt you removed all source of gluten. It can take 2 weeks for most symptoms to start to go away, reintroducing after 1 weeks you will probably not have that major of a backlash just yet. But some symptoms from a gluten exposure can take up to 6 months to go 100% away, Most people have the symptoms go away in 2-6 weeks really depends from person to person. And healing from damage to the intestines can take years. Took me over 3 years for my villi to heal as an example and I still have major issues with other intolerance with foods, nerve damage, and brain damage from how it effected me.

NOTE you do not have to be eating a TON of gluten for the testing just enough to keep your antibodies up, try half a slice of bread or a few wheat crackers a day. Before bed and sleep off the worst of it til you get the testing finished.


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



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
krystannkaty Newbie
On 6/19/2017 at 10:05 AM, dylannn said:

ok today is officially one week i've been gluten free and i haven't made any noticeable differences in feeling better. my first question is: how long should i wait to expect changes to occur? am i not giving it enough time? prior to going gluten free one of my issues was constipstion, as well as other health issues usually involving an upset stomach, nausea or an uneasy feeling in my stomach. but since going gluten free i have had a bowel movement different from usual. and today it was more loose and diarrhea like and it is very rarely like that. oh and about half way through the week i got a random rash pop up on one ankle???? advice or suggestions?? 

Hi, I am also one week gluten free and I twice i got a small, itchy rash on my feet but after some investigation i realized I was unknowingly consuming gluten.  I had gotten some french fries from a fast food restaurant and got very gassy and itchy.  Another day this week i ate cereal made from oats and the same thing happened, did some investigating and came to the conclusion they had gluten in them.   I have however already seen positive results such as the wide spread pain i had all over my body greatly subsided.  I have changed my diet several times the last few years and in my experience change in stool consistency is to be expected, but I take note of it as well because thats a great tool to help us know whats going on in our body.  Best wishes, do lots of research and take care!  krystannkaty

  • 3 weeks later...
ch88 Collaborator

You could try removing all grain and dairy and see if that helps. Processed foods can have cross contamination.  Lactose intolerance is common with celiac disease.  Fruits are high in fructose and it can be difficult for some people to digest fructose if they have digestive problems. Vegetables are healthy and nutritious.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,877
    • Most Online (within 30 mins)
      7,748

    hannahc
    Newest Member
    hannahc
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • Scott Adams
      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
    • trents
      Sometimes that is the case but what is curious to me is the remark by your physician about being "borderline". I assume he was referring to the total IGA score but it just seems like an irrelevant remark when it is on the high side rather than being deficient.
×
×
  • Create New...