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

Positive Antibodies After 2 years


SueOba

Recommended Posts

SueOba Newbie

I was diagnosed with celiac two years ago.  I feel like I am diligent avoiding gluten and cross contamination.  For the most part I feel good with the exception of very recent heartburn.  My celiac antibodies have not yet normalized though.   My results are:

Antibody    Diagnosis   6 months     18 months   2yrs

IgA              >162           29                  22                  20

IgG              92               38                  13                  15

tTG IgA       >100           9                     4                    5

My nutritionist wants me to have the SIBO test to see if that accounts for the continued positive antibodies.

Any thoughts are greatly appreciated!

Thanks.


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



Celiac.com Sponsor (A8-M):



Gemini Experienced

Are the 2 top tests the AGA IgA/IgG, to test for your reaction to gluten that you are consuming?  What are the reference ranges on each test you listed for the normal ranges?  It would help to know the answer on both.

Looking at this without knowing the above, I would say you have been doing a good job of avoiding gluten overall.  Your Ttg looks like it might be in the normal range at a 5, after an initial diagnosis at >100.  Remember, your Ttg could have been much, much higher but they only report up to 100.  I hate that.  They did that to me also so I had no idea exactly how high it was beyond 100. So, to bring it down to a 5 in 2 years is good.  I do see that your numbers bumped up by a couple of points but that is such a slight difference, I am not sure it is worth worrying about it right now.

Most labs use ranges for normal as follows.......<20 or < 10 will get you a normal reading, so you are not far off. You have brought your numbers down from pretty high values and it can take 2-3 years, depending on age and other factors. I would have her test for SIBO anyway if you have had a problem with heartburn. Then I would re-test your panel in 6 months and if those numbers are still slightly elevated, you'll have to go over your routine to see if you are ingesting gluten anywhere. Could they run the DGP test? That is a more sensitive version of the AGA Iga/IgG tests.

Overall, I would not say this panel is something to freak out about but doing the DGP would be better to gauge dietary compliance and getting tested for other possibilities is a good idea.

RMJ Mentor

I thought I was gluten free, but  I had to do the Gluten Contamination Elimination Diet to get my levels down that last little bit.

Open Original Shared Link

SueOba Newbie

Thanks for your responses!  

I think the tests are DGP - reported as Deamidated Gliadin ABS.  The normal ranges listed on the report are 0-19 for DGP IGA;  0-19 for DGP IGG; and 0-3 for TTG IGA.  I'm going to do the SIBO test.

RMJ - What led you to do the GCED?  Was it just elevated antibodies or were you symptomatic?

RMJ Mentor

I've never had obvious symptoms so it was the antibody levels.  

ahearnsberger Newbie
On November 21, 2015 at 1:31:57 PM, RMJ said:

I've never had obvious symptoms so it was the antibody levels.  

What type of Dr is helping you with this? I'm not getting any help, even with a gastroenterologist. 

RMJ Mentor

Gastroenterologist.  Although she is not a lot of help.  She didn't suggest the GCED, I did that on my own.  She does order the antibody tests when I ask for them.


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



Celiac.com Sponsor (A8-M):



ahearnsberger Newbie
Just now, RMJ said:

Gastroenterologist.  Although she is not a lot of help.  She didn't suggest the GCED, I did that on my own.  She does order the antibody tests when I ask for them.

thank you. it's so tiring to always have to ask my Dr to do what he should already be doing.

 

pippylongstocking Newbie
On 11/20/2015, 8:25:27, SueOba said:

I was diagnosed with celiac two years ago.  I feel like I am diligent avoiding gluten and cross contamination.  For the most part I feel good with the exception of very recent heartburn.  My celiac antibodies have not yet normalized though.   My results are:

Antibody    Diagnosis   6 months     18 months   2yrs

IgA              >162           29                  22                  20

IgG              92               38                  13                  15

tTG IgA       >100           9                     4                    5

My nutritionist wants me to have the SIBO test to see if that accounts for the continued positive antibodies.

Any thoughts are greatly appreciated!

Thanks.

I also had horrid heartburn and was tested positive for H-pylori as well as celiacs.  The heartburn was wretched, but a friend suggested I eat some pot (yes, marijuana) leaves because of the acid content; the acid in the leaves made the heartburn go away. Now I seldom need them.  I was using gluten-free antacids and that made things worse.  

Best of medicine and luck.

Pip

 

Archived

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

  • 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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.