• 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 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
      106,779
    • Total Posts
      932,367
  • Member Statistics

    • Total Members
      64,252
    • Most Online
      3,093

    Newest Member
    cmatott
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi all- im so sorry you are suffering from this gluten nightmare.....  here's my story in a nutshell. Any friendly advice is much appreciated. I am 41, female, healthy weight, ex smoker.. even quit alcohol 10 months ago because of AI disease. Been DX'd with 1) Sjogren's Syndrome and 2) Relapsing Polychondritis. For those that don't know, RP is an AI disease where the body destroys its cartilage. Its pretty aggressive and there is no cure. It is fatal for alot of ppl when the airways collapse. Ive had chronic inflammation for probably 10 years but it is getting progressively worse. It didn't dawn on me until a few weeks ago that gluten intolerance may be driving this. I am in between doctors. I have a new patient apt w/ a new internal med doc 06/28/17. Id planned to ask her then to please test me for celiacs. (going back onto gluten to test this makes me ill thinking about it) My brother and mother have it. I feel good and have plenty of energy. I am a healthy weight. I run, I bike, I walk, I take an hour long aerobics class 3 days a week. I have NO digestive issues. My 10 page labs are green across the board, except for high inflammation. Ive started researching this issue. Ive had more injections in the neck and back and wrists than I can remember. Ive had ablations, exploratory surgeries, botox, trigger point injections.. even a level 2 cervical fusion due to high inflammation in the spine and OA destroying the discs. I have reduced gluten as much as humanly possible. I quit drinking. I take a good quality probiotic and fish oil. My hormones are all good- I take sublinguals for those. My thyroid is perfect. My periods are perfect. My skin is clear. Ive stopped eating dairy, corn and soy. I pretty much currently live off big homemade green salads with olive oil, I make my own soap (which I use as shampoo) I make my own laundry detergent..I even started eating several fork fulls a day of fermented cabbage (ughh) because of the healthy benefits to the gut. Its only been a few weeks. Am I just impatient? What gives? My eyes, wrists and spine are absolutely on FIRE. XXOOO   Tracy
    • This is really tough.  There is still a lot of research needed in diagnosing (or dismissing) celiac disease.  It shouldn't be months/years of misery and uncertainty. A couple of years ago Dr. Marsh (THE Dr. Marsh of the Marsh biopsy rating system) criticized the US celiac community for not recognizing an increase in IELs as early celiac disease. He asked if these doctors would like to be responsible for the oseoperosis or lymphoma of the undiagnosed patients.  I have also seen that it can take months for antibodies to rise.  There was a paper (2015) that looked at gluten challenges in diagnosed celiac patients.  These are folks with confirmed celiac  and for some it took over 3 months for blood tests to show anything. I hope the strict gluten-free diet works for you. I hope to hear you report back in a couple of months.  I'm undergoing my gluten challenge right now. Week 2. It's just really tough. 
    • My 13 and 7 year old have Celiac Disease and my 4 year old has the genes.  I have a double dose of the genes so no matter what my children will get a gene that could develop into the disease.  I hope that my youngest son doesn't ever develop the disease, but his dr said it could activate later in life.  My kids are thriving, they have normal lives, they are smart and have gained knowledge about food that they can carry with them throughout their life.   They really don't let anything stop them from living a normal life.  I think you'll have the upper hand if you choose to have kids.  You'll have the knowledge of what to do to keep them safe if they do have Celiac Disease.  You'll be able to relate since you were young when you were diagnosed.  How was it for you growing up? 
    • My 7 year old son has this happen.  I too get highly angry, like could flip a vehicle kind of angry.  It's hard for the little ones to understand what is going on at the time, only knowing that they can't control themselves....  The glazed crazy look in his eye are always a tell.  Sleep helps, along with lots of water the following day.  The next day we talk about everything and try to figure out what could have glutened him.  We've had talks with our school and teachers letting them know that our son is to not eat anything unless we bring it.  I think the last time this happened to him was from using shared supplies after a treat party.  Now he's very cautious of putting his hands to his lips or mouth.    Now as far as chips, my kids stick with Kettle Brand Chips.  They are certified.  Potatoes aren't my friend so I can't really say if they taste great.     
    • Exactly!! Scuff, are you doing the gluten challenge?  How far along are you?  
  • Upcoming Events