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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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cindybea

Iga At 203.74 Am I Celiac?

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Doctors spend 15 minutes with you. That is the time you get. I am consulting you ... whoever is out there... (I have never blogged before) because I am overwhelmed and do not know what to do next.  I suffered from stomach pain during my early childhood. Finally, I had my appendix removed when I was 14 (1979). I am a school librarian, mother of 3, and fairly active but nearly always in pain. Just sold our motorcycle because of so much hip and joint pain. My doctor, 4 years ago, put me on Lyrica. I took it for a month and dumped it in the garbage and lived with the neuropathy, joint pain, and "fibromyalgia" my doctor diagnosed me with.  I am very active and work with K - 5th grade students. In December 2013 I read Wheat Belly and decided to go off gluten. I am Italian and this was a very difficult thing to do. I felt a lot  better but did not really go off. I just read Grain Brain (Brother had Schizophrenia / Dad suffering from Dementia) by Perlmutter and decided to switch doctors and ask for a celiac panel test. My IGA came out at 203.74. The test information said anything over 30 was bad. My doctor casually mentioned that I should stay away from gluten. I pretty much was off of it since December 2013. I had the test 2 weeks ago. I am overwhelmed. She did not diagnose me as having Celiac disease. I feel like I have it. There are so many people who do not believe it could be that and suggest gluten containing products to me. Since Monday (when I received the numbers I have been researching and will stay off all of it) but I guess I am simply asking for your input. Should I look further and get a biopsy? Should I take the number and just stay off gluten and who cares what family and friends are thinking? Sorry I sound so illogical.  I am not that type of person but I am overwhelmed at this point in time.

Thanks to anyone who is out there who has been through this or can assist. 

Cindy Bea

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Welcome to the board! Glad you found us. :)

 

Do you know exactly which test you had done?  The IgA (immunoglobulin A often called total serum IgA) is not actually a celiac test but a measure of you immune response in the mucosal linings of the body (intestines, mouth, etc).  Some doctors (incorrectly) shorten some of the celiac disease test names that are based on IgA, so it can get confusing.

 

These are the actual celiac disease tests:

  • tTG IgA and tTG IgA (tTG = anti-tissue transglutaminase) - the most common celiac disease tests
  • DGP IgA and DGP IgG (anti-deaminated gliadin peptides) - a new test which is good at detecting earlier celiac disease
  • EMA IgA (anti-endomysial)  -  similar to the tTG IgA but tends to be positive in more advanced cases
  • total serum IgA - a control test to ensure that the patient makes enough IgA for the IgA based celiac disease tests (tTG IgA, etc) to be accurate; 5% of celiacs are deficient in IgA but it generally does not impact one's health
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests
  • Endoscopic biopsy (6+ samples taken)

For accurate tests, you must be consuming gluten (1-2 slices of bread per day or the equivalent) in the 8-12 weeks prior to testing; the biopsy only requires 2-4 weeks on gluten. A celiac who is gluten-free for a time (weeks to months) will eventually have falsely negative tests.

 

My guess, and it's only a guess, is that the doctor either ran the tTG IgA or AGA IgA, and it was positive so you are most likely a celiac OR he just ran the (total serum) IgA and mistakenly thinks it is a celiac test.

 

Can you clarify which tests were run?  It's confusing, isn't it.  Hang in there.

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I would find a Celiac center or a GI that specializes in Celiac disease.  They will have the resources to help you and properly diagnose you.  There is a board here to search for doctors or ask for help, but if you are near a major metro area, chances are there is a Celiac clinic near you.   I use the analogy that sure, your dermatologist is a doctor and can probably deliver your baby, but going to an Ob/Gyn is better.  I see a lot of people here go to their GP dr for Celiac testing, and while there is nothing wrong with starting there, a Celiac specialist will be more up on the latest news and have more resources for you.

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Dear Nvsmom and Smri,

Thank you so much for replying. I learned from your posts and I appreciate it. I believe my next step is to find a specialist ... very good advice. 

I did see my General Practitioner. She said she did a "Celiac Panel blood test". The report says:

 

Gliadin IGG : 9.35       < 15 normal

 

Gliadin IGA 203.74      <15 normal

 

Endomysial IgA AB   Negative

 

Antireticulin AB IgA   Negative

 

Reference Lab: Quest Diagnostics Wood Dale IL, 

 

CCp AntiBody IgG:  1.50     <4.0 normal

 

"Results obtained from this date forward were obtained with the Immulite 2000. Results from other manufacturers assay methods may not be used interchangeably."

 

.....From my written report (Gliadin Iga) is what is listed....since it is not written  tTG Iga or DGP IGA can I assume that it is an AGA IGA number? 

 

I should see a specialist to explain but I don't want to start eating gluten again. My, that would kill me. I have been off since December (with a few cheating because I did not know what I was dealing with). Seeing my IGA (which ever one that means) at 203 and knowing that anything over 15 is not normal....I'm scared and now view gluten as a poison.

 

I can't help but think what are all those antigens doing in my body now and I do not want to create more by eating gluten every day in order to have another test.

 

I probably should see a specialist so they can educate me. It is confusing. I have been reading for days. Maybe I can call the lab and have them further explain the tests as well.  

 

Thank you ... truly... for being kind and educating me. I appreciate all the knowledge you can bestow. 

 

Cindy

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Others will know better than I but an Glidan IgA of over 200 being Gluten free for over 6 months seems suspect, especially with everything else being in the normal range.  I would get with a Celiac dr as soon as you can and see what is really going on.

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Thank you again for your help. I just made an appointment with a GI doctor who specializes in Celiac. I have the appointment July 31st. I feel like I am on a not so fun journey. 

Cindy Bea

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You could always try the other tests (tTG IgA, tTG IgG, DGP IgA and DGP IgG) now.  It is possible that your body still has high enough auto-antibody levels after 6 months of eating gluten-light - it sounds like you were not quite gluten-free which requires zero gluten. Sometimes a little gluten is enough for those tests, and sometimes the auto-antibodies are made for a long time.  You might get answers if you test now.

 

I agree that the test you were positive on was probably the AGA IgA.  They ran an older panel on you, the anti- reticulin IgA is an older test that is very rarely used anymore. The AGA IgA usually indicates a gluten sensitivity if it is positive. Some doctors believe that a positive AGA test can indicate non-celiac gluten sensitivity (NCGS) as well as celiac disease, but in my mind there isn't much difference between them except that celiac disease also damages the intestines and is better known than NCGS - they have the same symptoms. I believe the AGA IgA is about 80-95% specific to celiac disease as seen on this report (pages 10-12): http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

See a GI specialist if you can.  He might want to do an endoscopic biopsy which requires only an 2-4 week gluten challenge. That would also tell you whether the positive AGA IgA is caused by celiac disease or NCGS... probably - the test is only 80% accurate.

 

Feel free to go gluten-free now though. Just be aware of nutritional deficiencies that can appear like low Cu, Fe, Mg, K, Ca, D, B12, A, ferritin, zinc. Also be aware that hypothyroidism is found in 10-15% of celiacs so know those symptoms and maybe get tested for it (TSH, free T4 and free T3, TPO Ab). 

 

Best wishes.  :)

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Cindy.........The test you were positive on is the AGA IgA, which shows you are reacting to gluten, big time. The rest of your testing appears normal but the bottom line is that you are strongly reacting to gluten.  You could either have the testing done again with the tests that nvsmom has so expertly suggested or push for a biopsy, if an official diagnosis is what you want.  Your IgA test could have been much, much higher before you went gluten free/gluten lite.  I am not sure how strict you were with your diet. You know you need to be ingesting gluten for more testing but the fact it still was that high after being gluten-free for awhile speaks volumes.  You either were gluten lite or you were gluten free and your numbers were much higher and have come down to the 200+ number, which would not be unusual with numbers that high.  It can take a couple of years for blood work to normalize.

 

You need to be gluten free but whether you want to be further aggravated with doctors or just go gluten free and not look back is up to you.  I wish you luck!

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Thank you all. You have provided me with very useful information. Life is busy and active so I greatly appreciate you taking the time to help me. I will keep you posted. For now I will continue eating healthy as I am without gluten and share everything with my doctor July 31st. In the meantime I will keep reading and educating myself. I know I feel much better not eating gluten. One step at a time. It sure is comforting knowing you are here. Also...thank you for the vitamin/mineral information. I will take a supplement and share that also with doctor. 

Cindy Beatrice

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