Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Please Help With Blood Test Confusion - Thanks!
0

4 posts in this topic

Trying my best to summarize what’s been a long process – for years I believed my energy, mood, well-being, etc. were dramatically impacted by what I ate.  I concluded sugar really hit me hard for many days after I ate it (and I love sugar) but the longer I went without sugar, the progressively better I felt.  But it wasn’t long that even avoiding sugar alone didn’t seem to be working as well, so I started limiting wheat and gluten too, but not complete exclusion.

 

I then had blood work done for a physical (I didn’t even know they included a celiac panel until I got results – so it’s not something I was looking for) and ended up being positive on 1 of the 4 tests.

 

The positive test is labeled as DGP IgA (it was 21 with a normal range of <6.1); the negative tests were DGP IgG, TTG IgA, and EMA IgA.  The summary on the results says that ‘results may support a diagnosis of celiac disease’.

 

The hematologist is very highly regarded but not a celiac expert and he told me he thought the DGP IgA test was new and highly specific and nearly conclusive if not entirely conclusive, but that I should see a GI specialist.  We both reasoned the other 3 tests were likely negative because I had been probably 80% or more gluten free for the preceding 6 months and my understanding is that those tests are sensitive to if you are currently ingesting gluten.

 

I immediately went 100% gluten free and basically immediately felt like a million bucks.  But a couple weeks into this I started eating gluten-free junk food because I thought – yay – sugar wasn’t the issue – it was gluten – so I started eating more sugar so long as it was gluten-free.  I very quickly nosedived in to feeling mostly like crap again despite being gluten-free (although I still felt moderately better without gluten).

 

After 2 months being 100% gluten-free but not feeling very good (but still eating too much sugar and gluten-free junk food) I finally got to see a GI specialist.  He saw the negative tests and thought that I didn’t have celiac (he thought it might be small intestine bacterial overgrowth – SIBO – which has many of the same symptoms) – but he didn’t think the DGP IgA positive by itself meant I had celiac.  He offered doing the genetic test on the outside chance we could rule out celiac – and lo and behold I just found out it did rule it out!  I don’t have any of the necessary genes.

 

So I am wondering if anyone knows why I would have a positive DGP IgA test when I basically conclusively cannot have celiac disease?  I thought the DGP IgA test measured only antibodies that would be present if you had an issue with gluten.

 

And if the answer is I’m clearly gluten sensitive in a bad way, but don’t have celiac, then I wonder why the establishment is resisting that diagnosis if someone like me can be positive on the DPG IgA test but not have the genes that allow for celiac.

 

Thank you so much for any insight at all – I know most here have or have had similar troubling issues and I really appreciate any help in getting to the bottom of mine.

0

Share this post


Link to post
Share on other sites


Ads by Google:

My understanding is you can have celiac and not necessarily the gene.

0

Share this post


Link to post
Share on other sites

My understanding is you can have celiac and not necessarily the gene.

No it's the opposite.  You must have the genes (about 40% of the population has one or both genes) but you won't necessarily get celiac disease (only 1% will get it).  

 

Here's a good link on About.com:

 

http://celiacdisease.about.com/od/diagnosingceliacdisease/a/Celiac-Disease-Genetic-Testing.htm

 

But, you know, I have seen conflicting responses in this forum.  Let's hope someone can clarify!  

0

Share this post


Link to post
Share on other sites

There are a few board members around here who have celiac disease but do NOT have the genes that most celiacs have. It happens.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,418
    • Total Posts
      917,668
  • Topics

  • Posts

    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
    • Gluten and panic attacks
      Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life.  After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck.  Imagine!  Glad you feel better and yes, it was the wheat!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,549
    • Most Online
      1,763

    Newest Member
    ahp
    Joined