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

Trial Gluten Free?

JamTart

Recommended Posts

JamTart Rookie
JamTart
Posted

All symptoms point to celiac, but I had negative bloodwork. Doc recommended one month gluten free to see if symptoms clear up, if so- then back on gluten for a few Weeks to wait for a biopsy. Any thoughts on this? I've read a lot of info saying not to go gluten free before a positive diagnosis. Losing weight by the day. Please see other posts for more detailed info. Thanks for any replies!

Doc also testing for lupus, RA, electro phosphoresus in the meantime. A high CRP value is my only abnormal bloodwork

so far.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Mateto Enthusiast
Mateto
Posted

Well I'd say go for it, but not before you get a biopsy. I'd try and get a biopsy as soon as you can. THEN, go gluten-free and see if you feel better.

Now, you could go gluten-free first, then get a biopsy, but after being gluten-free for a month, I'd want to go back on gluten for 3 - 4 weeks before the biopsy. As you know, the biopsy will not be accurate if you're gluten free.

Link to comment
Share on other sites
JamTart Rookie
JamTart
  • Author
Posted

Thanks for your reply. If I go gluten free first to see if symptoms get better, and then go back on gluten for 4 weeks prior to a biopsy do you know if the chances for a false negative are the same? Does going off gluten for this initial month make it more likely I'll have a false negative when I eventually get a biopsy?

Link to comment
Share on other sites
pricklypear1971 Community Regular
pricklypear1971
Posted

Thanks for your reply. If I go gluten free first to see if symptoms get better, and then go back on gluten for 4 weeks prior to a biopsy do you know if the chances for a false negative are the same? Does going off gluten for this initial month make it more likely I'll have a false negative when I eventually get a biopsy?

It is recommended you eat a good dose of gluten for 2-3 months prior to testing.

Open Original Shared Link

Open Original Shared Link

Should I stop eating gluten before getting tested?

Antibody tests are only accurate when a patient is on a gluten-containing diet. Those concerned about celiac disease are strongly discouraged from starting a gluten-free diet without having had a firm diagnosis. Any change in the diet, even for as little as a month, can complicate the diagnostic process.

Open Original Shared Link

Link to comment
Share on other sites

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. RMJ
      - RMJ replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Potential diagnosis

      Based on the normal range and units, that looks like a test for total IgA, not a celiac specific test. Were any other tests run?
    2. cristiana
      - cristiana replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Potential diagnosis

      Hi @matts Yes.... it's a mystery to me why we are holding onto that 'o'. I expect it won't be there in 100 years! I think you are very wise to go back to your GP to chat through your options. If you would like to know one way or another, he or she may be happy for you to see a gastroenterologist through the NHS. If not, and you would...
    3. matts
      - matts replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Potential diagnosis

      Hi Cristiana, You’re spot on, I am from the UK! In terms of eating gluten prior to the blood test, I only had a week in between requesting and having it done but I think it would be accurate in terms of how much I’d eaten, I have two slices of toast most mornings and gluten included in most other meals throughout the day. Thank you for the...
    4. cristiana
      - cristiana replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Potential diagnosis

      Hi @matts Welcome to the forum. I'm a coeliac living in the UK. I have a hunch you may be posting from the UK because of the way you spell 'coeliac.' Our American friends, quite sensibly in my opinion, drop the 'o'! Anyway, if so the UK, 'satisfactory' blood tests mean as follow: 'Satisfactory. Take no action - This means that the doctor...
    5. knitty kitty
      - knitty kitty replied to Neat1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Maybe celiac, maybe just ncgs?

      @Neat1, I so glad you're going to try Thiamine! Do let us know how it goes. Benfotiamine is the form of Thiamine that may be very helpful to you. Benfotiamine has been shown to promote healing in the intestines. Be sure to take a B Complex because all eight B's work together. Try to get a minimum of 300 mg a day of Benfotiamine. Higher doses...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      125,153
    • Most Online (within 30 mins)
      7,748
    Adrienne jackson
    Newest Member
    Adrienne jackson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RMJ
      Potential diagnosis

      By RMJ · Posted

      Based on the normal range and units, that looks like a test for total IgA, not a celiac specific test.  Were any other tests run?
    • cristiana
      Potential diagnosis

      By cristiana · Posted

      Hi @matts Yes.... it's a mystery to me why we are holding onto that 'o'.   I expect it won't be there in 100 years! I think you are very wise to go back to your GP to chat through your options.   If you would like to know one way or another, he or she may be happy for you to see a gastroenterologist through the NHS.   If not, and you would still like to know and can afford it, you could do what my friend did,  She went direct to a consultant at our local private hospital to have an endoscopy.  Her situation was different from yours in that she did not test positive, but she did have gastric symptoms.  Her Dad was a coeliac and she wanted to be sure she wasn't one of a small number of coeliacs that don't ever test positive in the blood test, but do have villous damage in their gut. I do hope things work out well for you - perhaps drop by and give us an update sometime! Cristiana 
    • matts
      Potential diagnosis

      By matts · Posted

      Hi Cristiana, You’re spot on, I am from the UK!  In terms of eating gluten prior to the blood test, I only had a week in between requesting and having it done but I think it would be accurate in terms of how much I’d eaten, I have two slices of toast most mornings and gluten included in most other meals throughout the day. Thank you for the article, as you said with the family history it is probably correct that it should be investigated further. I’ll contact my GP on Monday and ask for further investigation, as you said I know they aren’t massively over the normal limit but must be a ‘normal’ range for a reason and if it’s come back above it then it needs looking at!  I’ll continue my diet as is for now so then if I do have further tests then they should be accurate results. Thanks again, Matt  
    • cristiana
      Potential diagnosis

      By cristiana · Posted

      Hi @matts Welcome to the forum. I'm a coeliac living in the UK.  I have a hunch you may be posting from the UK because of the way you spell 'coeliac.'  Our American friends, quite sensibly in my opinion, drop the 'o'! Anyway, if so the UK, 'satisfactory' blood tests mean as follow: 'Satisfactory. Take no action - This means that the doctor has looked at the results and deemed it to be very close to the normal range for the test and the result is not concerning. Some patients have consistently abnormal results that are 'normal' to them.'  Source: https://www.nrmc.nhs.uk/test-results#:~:text=Satisfactory.,are 'normal' to them. Now,  I have annual/biannual blood tests and get a few blood tests that consistently hover just above normal limits, and they come back with that typed next to them.  The doctors can look back at my records and see that the readings are normal for me. However, under your particular circumstances I would definitely request to be sent to a gastroenterologist.  Because although your GP considers your blood tests are satisfactory, i.e. just outside normal limits, they ARE nevertheless outside normal limits and you do have a first degree relative with Coeliac Disease.  I am no doctor but I would say this gives sufficient grounds for investigation, especially if you have been experiencing any gastric symptoms,  or seemingly unrelated things like headaches, tingling extremities, or tiredness - the symptoms of coeliac disease vary enormously from individual to individual. Also, may I ask you, have you been consuming gluten with most meals in the past few weeks prior to your blood test?  For a positive blood test,  coeliacs need to consume the equivalent of about 2-3 slices of gluten containing bread a day over a six to eight week period.  Because if you don't eat much gluten, you may not be reacting much.  Bear in mind that if you do go forward for further blood tests or an endoscopy, you will need to keep eating gluten. If it turns out you are a coeliac, in the UK a coeliac diagnosis will entitle you to all sorts of important NHS health monitoring and support, which in the long-term even if you are feeling well now, could be very beneficial to your health.   One other reason it would be good to know one way or another, is because if you turn out to be a coeliac, you will need to take the diet extremely seriously.  It can at times be a bit restricting, as you mother I am sure will tell you.  And gluten free substitutes can be expensive - my gluten-free pasta, my gluten-free chocolate biscuits, my gluten-free bread adds pounds to my weekly shop!! Cristiana      
    • knitty kitty
      Maybe celiac, maybe just ncgs?

      By knitty kitty · Posted

      @Neat1, I so glad you're going to try Thiamine!   Do let us know how it goes.   Benfotiamine is the form of Thiamine that may be very helpful to you.  Benfotiamine has been shown to promote healing in the intestines.  Be sure to take a B Complex because all eight B's work together.  Try to get a minimum of 300 mg a day of Benfotiamine.  Higher doses are needed to correct low thiamine.  Add a magnesium supplement.  Ask your doctor to check your Vitamin D level, which is frequently low in celiac disease.   Diamine Oxidase (DAO) supplements are digestive enzymes that may help until you start making sufficient amounts yourself with supplemented B vitamins. Chronic sinus infections are common in Celiac Disease.  
×
×
  • Create New...