• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac Testing
0

5 posts in this topic

       Hello all its very nice to be a new member to the form. I’m excited to see your feedback since most of you are experienced with this disease. I wanted to seek your advice and views. I wanted to ask because two years ago I was tested for celiac and the transglutaminase, IgA test came back a moderate positive. The doctor told me to dismiss it because my Gliadin Igg & Iga came back negative. The only problem was two months before I saw him I cut back on gluten because all of the abdominal discomfort pain, and a lot of other symptoms.  Told me to go see an allergist because it was probably a food allergy, so I went and only Wheat came back on the skin prick test, but the allergist said he wasn’t sure because my skin was so reactive.

       The last doctor I saw said that the transglutaminase IGA is a very accurate test and that all my symptoms match celiac disease: stomach pains, constipation & diaherra, fatigue, joint pain/stiffness, muscle aches cramps & spasms, tingling in my feet and hands, dental eroding (lost two teeth), blisters inside my mouth, dry skin, weight loss (168- now 149),  vit D deficiency in the past, and acne. Was a young active exercise guy never had any problems then all these issues began.

      Now my doc has me eating a gluten diet so I can be retested when I see the Gi. The only problem was that these last two weeks were hell bathroom wise, and now I don’t get as sick when I eat gluten but my other symptoms have got worst such as mood (depression/anxiety) and joint pain. He says I need to be retested because the last three years I have been off gluten but cheating here and there because I was told to not to worry about celiac, but I was off enough to throw off my testing.

     My question is, is it worth it to keep eating gluten to get tested again, or do I need to ignore the first doc and accept that I’m a celiac since of the transglutaminase IGA test? I mean I have been tested for every other imaginable disease or condition in the world, and all the doctors thought was that I’m crazy. 

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Welcome to the board.  :)

 

Your first doctor, in my opinion, gave you some bad information. The tTG IgA is a pretty specific test for celiac disease; I believe about 95% of all positive tests are caused by celiac disease with the other 5% of Borderline) positive tests being caused by diseases such as diabetes, colitis and crohns, liver disease, and thyroiditis.

 

The gliadin tests, and I'm assuming it is the anti-gliadin antibodies test (AGA IgA and AGA IgG), are older and less reliable tests that test for a sensitivity to gliadin...It's sensitivity is pretty low though so the test is not used frequently any more.

 

Personally, I would advise you to accept the first moderately positive tTG IgA test, along with all of your symptoms, is pointing to a celiac diagnosis. It seems that sometimes when people have been off gluten for a long time, they need to eat gluten for two or three months in order to raise their antibody levels high enough to show up in blood work. The usual advice is to consume gluten for 6 weeks but some doctors advise 8-12 weeks is better. That's a really long time to feel badly.  :(  An endoscopic biopsy usually requires just two to four weeks of gluten to be fairly sure of an accurate test. Could that be an option?

 

Were you feeling better gluten-free? I hope you are planning on resuming the gluten-free diet regardless of the latest test results.

 

Have you been tested for thyroid problems? Some of your symtoms could fit thyroiditis too.  Also, you might want to check your other nutrient levels too.  Celiacs are often low in magnesium, calcium, iron, ferritin, B12, K, A, zinc and.... I'm forgetting something. LOL

 

Good luck with whatever you decide to do.

0

Share this post


Link to post
Share on other sites

Thanks for your insight it has been helpful.  I have read that  tTg IgA is the most specific test for celiac. As for the anti-gliadin antibodies tests I have came back with moderate levels on the last two tests but I haven’t been eaten a lot of wheat when I was tested so they were not high enough. Since I have had a positive result tTg IgA result and its 95% correct, and I have been pretty sick this last week eaten gluten especially gooey gluten foods (muffin, doughy cookie: just one, white bread) it seems like I have my answer.  

I have had vitamin deficiencies  in the past from vit D, and magnesium. I also have low calcium, and potassium but both were just in the range so they were not negative. I have heard that everybody is different in vitamin levels anyways I guess? Although, usually my levels come back normal but are always in the low range.

As for the thyroid I have been tested a quite a bit over the past three years, because since I was told I was not a celiac it was thought to be my thyroid, but I have always had levels that were in range. Now one doctor told me that testing wasn’t always accurate and started me on thyroid replacement, which made me hyperthyroid. The last time my levels were checked I had a .9 tsh and low t4, ft4. So my doctor who believes I’m a celiac had my pituitary gland scan, but came back normal so he sent me to a specialist at the Mayo Clinic. The endocrinologist there said that my off levels were off due to the fact that my thyroid was trying to make up for another issue such as my weight loss. He tested my thyroid again and it was within the normal levels. 

I have felt better when I have gone gluten free such as less joint pain, fatigue, mood, and muscle twitches. The digestive problems go away completely unless I eat gluten, contaminate food, or very greasy food. I have never gone to long without eating gluten or contaminate food since I was told I was fine.

 I feel people, and even some medical sites seem to downplay all the affects gluten can have on your body, and they make recovery seem like such an easy and speedy process for celiacs. Will probably go see the GI whenever they schedule me, but since the tTg IgA is positive I may just start trying to get healthy now. Therefore I plan on going gluten free and hoping all my symptoms subside.

thanks for reading and taking the time

0

Share this post


Link to post
Share on other sites

From what I have gathered from some Celiac doctors - if its a mild positive, you would really want a good endoscopic biopsy (at least 4-6 samples) in the small intestine.  If you want that to be positive, you should continue to eat gluten until the procedure is finished.

0

Share this post


Link to post
Share on other sites

 Yes, I believe that is what my current doctor is doing, but I have to wait another week to see him. Hopefully it will go by fast because eating gluten all the time is making me feel pretty crappy. I have read on here that some doctors, and this includes mine feel that since the transglutaminase IGA is such an accurate test that most times some doctors do not even feel the need for an endoscopic biopsy procedure.  
  I think he is going to schedule me for the procedure anyways even though he feels that my moderate positive is accurate due to the lack of results from the other conditions that can cause a positive test, plus all of my common symptoms that point to celiac. 

0

Share this post


Link to post
Share on other sites
Ads by Google:


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
      107,324
    • Total Posts
      935,500
  • Member Statistics

    • Total Members
      64,985
    • Most Online
      3,093

    Newest Member
    Genevieve.Jones
    Joined
  • Popular Now

  • Topics

  • Posts

    • Well, thank you for replying. Yes, I would also like to know and have a certain "validation" but I will go on to eat gluten free.  Thank you for the idea of keeping a food diary.  I was keeping one for weight loss, but I guess my primary focus will be gluten-free as well.  I'm sorry you had to eat gluten just to find out both tests were negative. That was disappointing, I can only imagine. 
    • Thank you everyone. Jmg & cycling lady sorry for being snippy . I appreciate your help just frustrated. sorry if I am a bit snippy. Not well as you sense. I hate this particular symptom/ reaction. The gluten challenge opened the door to a bunch of  symptoms I buried for 3 1/2 gluten-free years that I had no intention of waking again. I now know it's always been immune and food, but get frustrated over the the amount of time it has not been diagnosed it feels unjust and that most Dr still don't get it 38 years later.  It was reborn after my gluten challenge and I am beyond sad we discovered my DS has this too. As we removed my allergens from the house and my DS was off the foods, if he ate something at school or a friends (because we just removed it for mom) we quickly found and he that he's like mom. He looks like dads mini me but more handsome, but has moms food issues -yikes.  His ped Dr would not test him for celiac or refer him and does not understand food intolerances vs IgE allergies. when we ask for a prescription for allergen free Advil or Tylenol ( I found a compounding  pharamacy willing to work with us) he had ortho work done , she tells us she does not know how to write a prescription for that.   We really don't like reactions and it did say 100 percent juice and quite frankly we believed it.  The histamine  definetly a potential issue as sulphites does not seem consistent food diary wise. I am not sure what is going on. More likely we are celiacs with leaky guts manifesting as food sensitivities trying to heal. I just know I have more intolerances then when I went in. I went into the challenge not being able to eat gluten and came out with all heck breaking lose.  I quit my PT job so I can Prep and cook from scratch entirely growing all my own herbs etc trying to heal. My husband actually enjoys our food even more and tolerates the "woman he married being gone and replaced by this alien" my words not his. He does want me to heal, believes I will, so he can have his wife back. I question if I just have to accept who I am now. I am disheartened that it's slow to heal and despite my years of this undiagnosed garbage I can't get my son the help he needs in 2017! thanks for letting me rant. It was stupid to believe a processed juice maker I'm waiting to activate my water kefir colony so we can add something to our homemade almond milk and water options.   thanks for letting me rant and why do I still have to rant.   maybe the 43 years of frustration and anger of being an undiagnosed celiac.   so sorry y'all. Cranky few days  
    • My daughter did not test positive for celiac (6 week gluten challenge after being gluten free for 2 months).  So she is technically NCGS. One of her worst symptoms is leg pain. It was a chronic problem when she was 7, to the point where she could no longer play soccer. At 8 we went gluten free because of GI issues and the leg pain went away. It came back with the gluten challenge and again went away when we went off gluten for good after testing. If she gets glutened, that is one of the tell-tale symptoms. She has had to use crutches because the pain is so bad.  And when glutened, the pain usually lasts about 3 days. 
    • Thanks raven and awol--I think she will feel much better hearing that these pains could be due to her celiac.  I don't know about the Epsom salts-never asked-so I definitely will.  I think further compounding it right now is that the doctor did not want her to take ibuprofen for 7 days before the procedure and not sure if Tylenol is allowed but she can't take it because it messes with the continuous glucose monitor that she wears.  Only 4 more days.   I will try to see if my primary can or will run a full celiac panel for me.  Left him a message asking why he didn't test my immunoglobulin a and whether we should be running the full panel.  I have encouraged my husband to test as well--he did just have a colonoscopy and endoscopy last fall--looking for other things but would they have been able to see celiac if there?  He has bad acid reflux and they were just doing the colonoscopy since he turned 50.  My other daughter-who has Hashimoto's-was genetically tested for celiac through Prometheus labs about 6 years ago due to our family history of autoimmune and she was having bad stomach issues--that came back negative.  So I think (hope) she's good?  
    • Omg I love quiche.  https://www.bettycrocker.com/recipes/gluten-free-quiche-lorraine/1d20d2e5-e2cd-4b2a-bc83-38bee7736463 i have trail mix for breakfast. Its nutty goodness is high in protein and helps me stay full.  
  • Upcoming Events