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

Newby Help

nadinejane

Recommended Posts

nadinejane Newbie
nadinejane
Posted

Hello all,

I'm a newby to this so hopefully I'm in the right section. 

I have just had my tests done for celiac and they came back negative. I'm now a dead end of what to do so I'm wondering if I should just go gluten free to see how I feel and if it makes me feel better or is there other tests I could do. So really it's just a few questions.

1. If I go gluten free will the effects be instant as in within a few days just so I'm aware?

2. Are there any further tests I should be doing or asking the doctor for? (I've requested he calls me back today before I get fobbed off again)

3. are there any good books I could get in the UK as a intro / beginners to gluten free I know we have websites and things but sometimes prefer to have a book to go from and carry round

I know these questions probably get asked so many times so apologies if I should be in a diff section.

Thanks in advance.

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

Celiac.com Sponsor (A8-M):


sheena85 Newbie
sheena85
Posted

Hi Nadine,

Sadly I have no advice for you, I came to this website looking for the same answer you have asked.

Hopefully someone will have some useful advice for us, I am also confused on where to go from here.  I had negative blood results come back yesterday for celiac.  I am also in the UK.

Take care.

Newly Diagnosed Apprentice
Newly Diagnosed
Posted

When you had your tests done were you eating gluten?  If you have been gluten free for any period of time or even cutting back on your gluten intake this would affect your results and give you a false negative.  I believe there is also a celiac gene test, but I am not sure of the details on that.

As to tips for going gluten free I think the newbie section of this website has a lot of good tips.  For me, I had no celiac symptoms except heartburn.  When I went gluten free I actually felt worse for a while as my body adjusted.  Then about a month later I realized my heartburn was much better.  But everyone is different.  I have read some people with different symptoms who noticed improvement after a few days. 

cyclinglady Grand Master
cyclinglady
Posted

First you need to make sure you had the entire celiac blood panel taken.   Often just a screening test is given (TTG IGA and IGA deficiency that catches most but not all celiacs (like me).   These are the tests:

Open Original Shared Link

If you have been on a gluten free diet then the tests will be inaccurate.  
 
It takes most Celiacs to feel better in a few weeks, months or years!  It all depends on the amount of intestinal damage.  If celiac disease is ruled out, it might not be ruled out for life.  You may have to check again as it can develop at anytime in one's life.   Not much is known about a gluten sensitivity unfortunately!  There are no tests for that.  The genetic test just helps rule out celiac disease as about 35% of the poulation carries the genes but only a few go on to develop celiac disease.  It will not diagnose you.  
 
As far as other tests, a CBC (check for anemia) and a vitamin and minerals test is helpful.  
 
Read the Newbie section under " Coping" for tips and advice.  
 
Do do not give up!  You are your best health advocate.  Research all you can to help your doctors.  
 

 

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,804
    • Most Online (within 30 mins)
      7,748
    Sister Sip Sip
    Newest Member
    Sister Sip Sip
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Oh yes I can understand the tiredness after going threw all that, must be exhausting especially on the mind I have high aniexty so I can understand that , I wish there more easier ways for people to get help , I had a MRI on my spine some years ago without anything it was really quick and no prep , I understand the need for  them to see better with the bowel ,but you think they would use something a little less traumatic  for ibd sufferers on the bowels by now ,I hope your feeling better today 🙏
    • Colleen H
      Celiac attack confusion and anxiety

      By Colleen H · Posted

      I wonder if tingling burning feet are part of it.. I'm not sure if it's the med reaction that people with gluten intolerance get or the food we ate  It's frustrating because a person who did not want to admit to himself I had this condition wanted me to eat this chicken sandwich and now I'm stuck with a variety of symptoms plus now I'm hungry on top of it..  I'm new to this so I forget that "one bite" of the wrong thing can hurt us.😔. Do we stop eating if someone exposed us to gluten ??  My stomach is rumbling but my joints hurt ...  It's weird because I can feel the anxiety coming on.  I get joint problems ,  I don't know if anyone ever got hot flashes?? I suppose if it affects people head to toes you can get that too.   It's weird...hard to decipher what is what.   Also how long do I have to deal with this attack??  Makes me feel like not getting up out of bed.  I get too many symptoms which  horrible.  Thank you for your response..  
    • wellthatsfun
      still struggling with cravings

      By wellthatsfun · Posted

      as my last post stated, i was diagnosed via endoscopy on the 14th of june. i have been eating amazing home cooked meals, luckily, mainly cooked by my boyfriend who is extremely careful about contamination (and is an incredible cook at that). however, i find myself in a mental rut still. being 18, this is the time in my life where i should be exploring things, going out, having fun. yet every corner i turn i'm tortured by the amazing smell of something i can't have anymore. the wonderful sight of such yummy foods. it's near torture. if my boyfriend and his friend who lives with us buy something i can't have, they'll usually eat it outside of the house or the car or wherever we are - which is greatly appreciated - but even seeing a burger or chips or a sausage roll in their hands guts me almost beyond repair. i just wanna have it again too. i miss it. i feel left out and it makes me very sad all the time. it's not their fault. they are allowed to eat whatever they want to, whatever their intestines will allow. it just stings, bad. and i feel so ungrateful given i basically have a private chef who is doubly the love of my life. but it's just so hard. i know i'll adapt. i haven't given up hope.i just wanted to vent. thank you for reading
    • RDLiberty
      Toothpaste question.

      By RDLiberty · Posted

      Thank you. I must have misinterpreted a study or something. Thank you for the clarification. Much appreciated. Almost three years into my celiac diagnosis and I'm still learning new things. 
×
×
  • 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.