0
cindybea

Iga At 203.74 Am I Celiac?

Rate this topic

Recommended Posts

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

Share this post


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


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites

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.  :)

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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

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

  • Who's Online   8 Members, 0 Anonymous, 216 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.