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

Tracking Your Recovery With Blood Tests

Kim69

Recommended Posts

Kim69 Apprentice
Kim69
Posted

Hi. I liked to see a trend townwards towards normality in my blood work. These are my results. I still feel crappy but that's another issue!

I have recently had tests done 1 yr post dx on a gluten-free diet.

AGA IgG <10 (less than 20 is negative on this test) so happy days

T-glutaminase <5 (less than 5 is negative)

So both are negative. Over the past year I have had these tests a few times and they have shown a steady decline.

In November last year I had the following results:

Anti gliadin IgA <10 (0-20)

Anti gliadin IgG 22 (0-42)

Endomysial antibodies negative

T transglutaminase IgA <5

And in may 2010 just after I was biopsy dx Coeliac:

AGA IgA 10 (0-20)

AGA IgG 84 H (0-42) positive

Endomysial Ab positive

T transglutiminase >100 very positive!

I found it encouraging to get these test results, showing that I am not getting at least a severe reaction from cc. Has anyone else got results to share?

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

Celiac.com Sponsor (A8-M):


Mack the Knife Explorer
Mack the Knife
Posted

I have results but they are not encouraging.

I've been on a very strict gluten free diet for 18 months now. I don't cheat ever and I am really careful about cc. However, my blood tests are still coming back strongly positive for Coeliac disease. So that's not good. :angry:

I don't get really sick but I do feel low-level crap quite a lot of the time.

I have to go in for another biopsy soon to see if my intestines are healing at all.

I'm starting to get a bit worried.

anabananakins Explorer
anabananakins
Posted

I was actually going to come and post about this because I was so excited with my results after seeing the doctor this morning.

I tested negative for celiac, but I'm being treated for insulin resistance. Since the medication (Metformin) is known to cause B12 levels to drop, they keep an eye on it, but I hadn't had any problems since I started taking it 2 years ago. I always hovered around the high 300s (reference range: 145-637).

Anyway, in May 2010, I was at 383. I went gluten free a month later. The results in mid July 2010 - an increase to 424. Today's results - 703!! I'm not taking B12.

My vit D went from a very low 22 (reference range: 51-140) to 107. I do take vit D tablets.

I find the increase in B12 really interesting. I tested negative in blood tests, and didn't have the genes they usually identify, so my doctor didn't go further with the testing. But if my B12 has increased so much since I went gluten free, even though I'm on a medication known to cause it to lower, surely that indicates that there were problems with my villi and absorption? I've never really understood how non-celiac gluten intolerance compares to celiac when it comes to what's happening on the inside.

Or (and this is how I mostly feel about it ) I do have celiac but the testing hasn't caught up to how mine manifests.

Gemini Experienced
Gemini
Posted

Hi. I liked to see a trend townwards towards normality in my blood work. These are my results. I still feel crappy but that's another issue!

I have recently had tests done 1 yr post dx on a gluten-free diet.

AGA IgG <10 (less than 20 is negative on this test) so happy days

T-glutaminase <5 (less than 5 is negative)

So both are negative. Over the past year I have had these tests a few times and they have shown a steady decline.

In November last year I had the following results:

Anti gliadin IgA <10 (0-20)

Anti gliadin IgG 22 (0-42)

Endomysial antibodies negative

T transglutaminase IgA <5

And in may 2010 just after I was biopsy dx Coeliac:

AGA IgA 10 (0-20)

AGA IgG 84 H (0-42) positive

Endomysial Ab positive

T transglutiminase >100 very positive!

I found it encouraging to get these test results, showing that I am not getting at least a severe reaction from cc. Has anyone else got results to share?

I have had great results on my blood work after starting the gluten-free diet. At diagnosis, my tTg was 200,I had a positive EMA, and all my other tests failed by high numbers. I never went back to the doctor for a year because I had issues with the way they handled the whole situation and figured it would be a waste of time to re-do blood work that soon.

One year later and my AGA IgA/IgG were at 3 from a high of around 50. Normal is anything under 5. My tTg was still in the high normal range but I have 4 autoimmune diseases total and it took awhile for that to normalize to a good level. I just had my levels checked again at the 6 year mark and my AGA IgA/IgG came in at 1.2. That's as good as it gets for a celiac and I am happy with those numbers. The longer you live gluten-free, the easier it becomes and now it is second nature to me.

Kim69 Apprentice
Kim69
Posted
  • Author

I have results but they are not encouraging.

I've been on a very strict gluten free diet for 18 months now. I don't cheat ever and I am really careful about cc. However, my blood tests are still coming back strongly positive for Coeliac disease. So that's not good. :angry:

I don't get really sick but I do feel low-level crap quite a lot of the time.

I have to go in for another biopsy soon to see if my intestines are healing at all.

I'm starting to get a bit worried.

Hi Mack the knife. No it's not good if your tests are still strongly positive. It's certainly discouraging for you. I still feel crappy but at least my dr is happy with the blood tests.

A repeat gastroscopy is s good idea. I am having one on Wednesday. Oh are you deficient in any of the usual suspects still? Like vit d or zinc, iron, b12?

Mack the Knife Explorer
Mack the Knife
Posted

Hi Mack the knife. No it's not good if your tests are still strongly positive. It's certainly discouraging for you. I still feel crappy but at least my dr is happy with the blood tests.

A repeat gastroscopy is s good idea. I am having one on Wednesday. Oh are you deficient in any of the usual suspects still? Like vit d or zinc, iron, b12?

My Ferrtin levels and vitamin D are very low. I'm taking supplements and have had iron injections but they're not improving.

Archived

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

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

  • Member Statistics

    • Total Members
      132,921
    • Most Online (within 30 mins)
      7,748
    Rusty49
    Newest Member
    Rusty49
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.