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

Recent Celiac Diagnosis And Questions


mfalbo

Recommended Posts

mfalbo Rookie

Hi All, I am new to this and I have some questions regarding my recent diagnosis of celiac disease.  I had to go to the doctor because I had been sick for 4-5 weeks with cold symptoms and my lymph nodes in my neck were huge and painful and after a long discussion and blood tests my doc asked if he could test me for celiacs. I said sure but I haven't had any stomach problems just some weight loss and my labs were off. And to my surprise it came back positive but I am just wondering what my results mean. These are my results

 

Endomysial Iga Ab screen -  positive titer 1:80 (standard range 0)

Gliadin AB Deamidated IGG - 53.5 (reference range for negative <20)

Gliadin AB Deamidated IGA - 130 (reference range for negative <20)

Reticulin IGA AB titer - Negative

 

It has been 2 weeks of trying to go gluten free and I have to say I do feel a bit better. 

Any info will be awesome! Thanks so much!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome!

Here is a link to our newbie thread:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

My only symptom was anemia. I was shocked. But later found out that I had other issues like Osteoporosis. It seems like your doctor is willing to go with the blood test alone instead of doing a biopsy, but that is okay! Let us know if you have any questions!

SMRI Collaborator

Hi All, I am new to this and I have some questions regarding my recent diagnosis of celiac disease.  I had to go to the doctor because I had been sick for 4-5 weeks with cold symptoms and my lymph nodes in my neck were huge and painful and after a long discussion and blood tests my doc asked if he could test me for celiacs. I said sure but I haven't had any stomach problems just some weight loss and my labs were off. And to my surprise it came back positive but I am just wondering what my results mean. These are my results

 

Endomysial Iga Ab screen -  positive titer 1:80 (standard range 0)

Gliadin AB Deamidated IGG - 53.5 (reference range for negative <20)

Gliadin AB Deamidated IGA - 130 (reference range for negative <20)

Reticulin IGA AB titer - Negative

 

It has been 2 weeks of trying to go gluten free and I have to say I do feel a bit better. 

Any info will be awesome! Thanks so much!

 

That is a pretty for sure positive.  I've recently been diagnosed as well and this board is very helpful.  Biggest thing is getting your house gluten-free or getting a zone in your kitchen gluten-free at least.  It's surprising how gluten hides in food and getting into the habit of reading every label takes a bit of work.  I'm on week 2 of being totally gluten-free but have reduced my consumption over the past month.  I'm noticing some improvements already.

GottaSki Mentor

Welcome!

Those tests are quite clear. The DGPs are extremely high and the endomysial titer indicates damage to the endomysial layer of the small intestine ... in simple terms - damage caused in Celiac Disease.

I am curious, did your doctor run:

Tissue Transglutaminase...also known as tTG (both IgA and IgG)?

Do read the Newbie Thread CyclingLady linked for you...it contains loads of fast forward info.

Let us know if you have any questions...the transition is not easy...but well worth the effort :)

mfalbo Rookie

Welcome!

Here is a link to our newbie thread:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

My only symptom was anemia. I was shocked. But later found out that I had other issues like Osteoporosis. It seems like your doctor is willing to go with the blood test alone instead of doing a biopsy, but that is okay! Let us know if you have any questions!

it's so weird I would not have even thought I was also but yes things are making sense now. I've had anemia for years and I am showing some bone loss on my bone density scans.

Did you notice any deference with anything when started going gluten-free?

mfalbo Rookie

That is a pretty for sure positive.  I've recently been diagnosed as well and this board is very helpful.  Biggest thing is getting your house gluten-free or getting a zone in your kitchen gluten-free at least.  It's surprising how gluten hides in food and getting into the habit of reading every label takes a bit of work.  I'm on week 2 of being totally gluten-free but have reduced my consumption over the past month.  I'm noticing some improvements already.

That's great that you are noticing improvements. What kind of things are you noticing that are improving?

mfalbo Rookie

Welcome!

Those tests are quite clear. The DGPs are extremely high and the endomysial titer indicates damage to the endomysial layer of the small intestine ... in simple terms - damage caused in Celiac Disease.

I am curious, did your doctor run:

Tissue Transglutaminase...also known as tTG (both IgA and IgG)?

Do read the Newbie Thread CyclingLady linked for you...it contains loads of fast forward info.

Let us know if you have any questions...the transition is not easy...but well worth the effort :)

Hi there! No my doc did not order the tTG, what does that test look for?

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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Hi there! No my doc did not order the tTG, what does that test look for?

The tTG Iga is very similar to the EMA IgA in that it would indicate damage to the intestinal damage.  The EMA IgA tends to show more advanced damage than the tTG IgA. I have rarely seen a positive EMA IgA without a positive tTG IgA.  Gottaski was probably wondering because many doctors won't even run the EMA IgA until AFTER you have had a positive tTG IgA.

 

The deaminated gliadin peptide tests (DGP IgA and DGP IgG) show an extreme intolerance to gluten (gliadin). So you've got intestinal damage and a gluten intolerance.  That is definitely celiac disease.

 

The reticulin IgA titre is quite an old test and rarely used anymore because it is not as reliable as the newer tests, meaning it can miss celiacs - it looks like it missed you.

 

This report has some more info on the tests on pages 10-12: Open Original Shared Link

 

Welcome to the board and good luck with the gluten-free diet.  :)

GottaSki Mentor

yep, what Nicole said!

mfalbo Rookie

The tTG Iga is very similar to the EMA IgA in that it would indicate damage to the intestinal damage.  The EMA IgA tends to show more advanced damage than the tTG IgA. I have rarely seen a positive EMA IgA without a positive tTG IgA.  Gottaski was probably wondering because many doctors won't even run the EMA IgA until AFTER you have had a positive tTG IgA.

 

The deaminated gliadin peptide tests (DGP IgA and DGP IgG) show an extreme intolerance to gluten (gliadin). So you've got intestinal damage and a gluten intolerance.  That is definitely celiac disease.

 

The reticulin IgA titre is quite an old test and rarely used anymore because it is not as reliable as the newer tests, meaning it can miss celiacs - it looks like it missed you.

 

This report has some more info on the tests on pages 10-12: Open Original Shared Link

 

Welcome to the board and good luck with the gluten-free diet.   :)

Thank you so much for the info! I am so glad I found this because I have no idea what to do.  It's just hard to find out how sensitive I am because I don't have much stomach problems with it. 

cyclinglady Grand Master

it's so weird I would not have even thought I was also but yes things are making sense now. I've had anemia for years and I am showing some bone loss on my bone density scans.

Did you notice any deference with anything when started going gluten-free?

The anemia resolved in six months. I will not get another bone scan until July 2015. I am on HRT, calcium, vit. D, Magnesium and exercise to build bone. My ribs and hips no longer ache when sleeping on my side, so I think I am building bone!

SMRI Collaborator

That's great that you are noticing improvements. What kind of things are you noticing that are improving?

 

I've mainly noticed more firm stools, still not totally firm, but not D either.  I also have way less gas production :D.  I'm not AS tired but I also have some heart thing going on so it might be more of the cause of that.  Brain fog is still there but I'm rolling my eyes at myself much less :D.  I really didn't have any symptoms that I noticed except the D--was being tested for other things and they put the Celiac test in the just because of the D.  Oh, and after 15 months, my period decided to come back....I could have done with not having that come back :D.

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. - 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.

    2. - 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.

    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. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams 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
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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

    • 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?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.