Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store.

A Word Of Caution To Preliminary/self Celiac Diagnosis

7 posts in this topic

I want to share my story because I think it may be of some help to others on this forum.


For years I dealt with painful bloating, upper stomach pain, loose stool and constipation.  In May of 2012 things became much worse.  Existing symptoms worsened and new symptoms such as fatigue, skin issues and brain fog started occurring.  I'm not usually one to go to the doctor unless I am on my death bed, but all of these rapid changes were concerning and I decided to make an appointment.


After explaining everything to my doctor, she ordered some blood tests, one of which was Tissue Transglutaminase IgA.  My insurance carrier is Kaiser, and the accepted normal range for this test is < 0.90.  My result came in at 0.94, and after some discussion with my doctor, I was told that I had a borderline result and that I should limit my gluten intake.  At this point I started research on the Tissue transglutaminase IgA test as well as Celiac.  Prior to this test, I didn't know much about Celiac, and it never really occurred to me that I could have it.


I found a great number of sources stating the accuracy of the Tissue Transglutaminase IgA test ranging in the high 90% range with false positives almost never occurring. Additionally, I found that in order for the test to be accurate, the person being tested needs to be eating gluten regularly for some time leading up to the test.  I wanted to be sure, so I asked my doctor for a second test, and before having my blood drawn, I put myself on a very gluten rich diet.


I went in for my second Tissue Transglutaminase IgA test in June, about one month later, and the result came back at 1.33, much higher than the previous 0.94 test and the 0.90 normal result.  At this point my deductive reasoning took over and I accepted the reality of the appeared that I had Celiac.  I went into denial mode, and I began frantically researching, trying to find other causes for elevated levels.  Initially, after reading lots of user forums, was convinced that gluten intolerance and Celiac were simply the same condition at different severities, but found that to be a false claim as gluten intolerance won't cause your body to produce antibodies when you consume gluten.  I also found out that Wheat allergies won't cause the antibodies either.


I spoke with a GI doctor, and they suggested we do an upper endoscopy to confirm the diagnosis.  At this point, after all of the research I had done, and after the increase in levels from the first test to the second, I decided to forego the endoscopy and simply move forward adopting a gluten free diet, mainly because the treatment plan wouldn't change with a diagnosis and also because I didn't want a pre-existing condition for insurance reasons.


I spent the next year and a half somewhat depressed, even though I didn't know it at the time.  I had gluten a few times, and when I did, felt terrible a few days after with symptoms lasting a week or so.  I did more research and began to notice new symptoms including peripheral neuropathy, joint pain and memory issues. 


Fast forward to 8 weeks ago, the end of 2013...I'm not sure what changed my mind, but I began to have doubts again, telling myself, I don't think I have it.   I started doing research again, and at this point found some new information that I had not uncovered initially.  I read at the University of Chicago Celiac Disease Center, that in some cases, people will have elevated levels on the Tissue Transglutaminase IgA test even though they do not have Celiac.  The explanation is that at some point in the person's life, after a stomach-flu or other event, the small intestine becomes slightly permeable, gluten is ingested, and the body starts producing antibodies against gluten.  From that point forward, the body will always produce antibodies when gluten is consumed.


I found this new information promising and decided to get the endoscopy, as living my life not knowing one way or the other was driving me crazy.  At this point, I had reversed my thinking 180 degrees from being certain that I had Celiac to being certain that I did not.  I started to feel excited about not having it.  The doctor put me on a six week gluten challenge and scheduled the endoscopy.  


Over the next 8 weeks, I ate gluten at almost ever meal.  I ate a ton of it, as much as I could, because I wanted to make sure there would be enough damage to detect.  Over these 8 weeks, I didn't have any negative effects from the gluten.  No bloating, no joint pain, no peripheral neuropathy, and my brain fog was improving too.


Additionally, someone had ordered me the DNA test for Christmas, and I was eager to get the results because they give you your raw DNA data and you can check if you carry the celiac genes.  My DNA test results came back 3 days for the endoscopy and I found out that I do NOT carry the genes that 98% of people with celiac carry, leaving only a 2% chance that I might have it.


To cut to the chase here, the endoscopy was performed, and the biopsies were normal, and I do NOT have celiac.


This is good news for me, but I learned a very valuable lesson over the last few years, and I think it has value to others who may be in a similar situation.  First off, if you get a positive blood test, follow your doctor's advice and get the endoscopy.  You may very well be producing antibodies to gluten due to a stomach flu you had in childhood and not have Celiac.  Also, taking a closer look inside your esophagus, stomach and intestine may uncover other issues you weren't aware of like GERD or HPylori.  By the way, the procedure was a breeze...not a big deal at all.  Next, do not underestimate the power of your thoughts and belief and how they can manifest onto your physical body.  I spent over a year with tingling fingers and toes, sore joints and brain fog from a self diagnosed condition that I don't actually have.  I know there are many people who do indeed have celiac, and I'm truly sorry for that, but for those of you that don't have an official diagnosis, do yourself a favor and get the endoscopy.


By the way, after all this time, all of my symptoms were due to having a mild case of GERD, some overeating and a change in eating habits.  I've started paying closer attention to how and what I eat, and I feel a lot better.



Share this post

Link to post
Share on other sites

Ads by Google:

With your last two paragraphs you couldn't have said it better.  I am glad you got a reversal on your assumed diagnosis.  Now go eat a dang donut for me!  :D  LOL


Share this post

Link to post
Share on other sites

Thank you for taking the time to share your story.  I agree that getting to the real cause of any medical problem is very important.  Congratulations on finding out the true cause of yours... and while you're eating a donut for Laura, eat an Oreo and a well-buttered dinner roll for me too, won't you?  :)


Share this post

Link to post
Share on other sites

Hi MMarksbury, and welcome to the forum! :)


You have an interesting story.  Sick for years and then one positive test for antibodies.  It is better to do all the tests for gliaden antibodies because sometimes people will have a reaction on one test but not another.  Or a reaction on just one of the tests but none of the others.


Here's a list of the antibodie tests for celiac disease


Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA


Another possibility for your situation is NCGI (non-celiac gluten intolerance).  NCGI causes symptoms like celiac disease but doesn't cause villi damage.  There is research being done on NCGI but not much is known as the moment.  NCGI may or may not cause long term damage to the body.  Although they cause similar symptoms, celiac and NCGI are not the same thing, so the tests for celiac disease will not show the presence of NCGI..


Here are a few articles about it for info.


Non-celiac wheat sensitivity article

Innate immune response in AI diseases

Gliadin Triggers Innate Immune Reaction in Celiac and Non-celiac Individuals


Share this post

Link to post
Share on other sites

Thanks for sharing your story.  It would seem that if leaky gut was causing your body to create antibodies to gluten that you would have also developed multiple other food sensitivies, as other food particles would have also been leaking into your blood causing an auto immune response as well.  Was that the case?  I'm in limbo, trying to decide whether to pursue a diagnosis as I've been off gluten for 4 months now and the thought of eating gluten again is not something I'm looking forward to.


Share this post

Link to post
Share on other sites

OK, if you don't mind, could you have a doughnut for me too? And I'd love a few of those buttered dinner rolls, preferably fresh out of the oven. Oh, and if you're ever near Plainfield, Connecticut, could you go to Pizzarama and eat a large pepperoni pizza for me? That's for breakfast and lunch. For dinner could you please have some baked stuffed shrimp? Lots of them? And when you're too full to take another bite, could you please have just one more? And then...


Share this post

Link to post
Share on other sites

Sorry to you folks who can't enjoy those nice treats.  :(


Thanks for sharing your story.  It would seem that if leaky gut was causing your body to create antibodies to gluten that you would have also developed multiple other food sensitivies, as other food particles would have also been leaking into your blood causing an auto immune response as well.  Was that the case?  I'm in limbo, trying to decide whether to pursue a diagnosis as I've been off gluten for 4 months now and the thought of eating gluten again is not something I'm looking forward to.


In terms of leaky gut, I considered that when I was in my denial stage, trying to grasp onto anything I could find that would cause my symptoms but wasn't celiac.  I didn't have particularly good eating habits as a child or young adult.  As a young adult I was a vegetarian/vegan for 10 years, and during that time ate mostly fake meat products which are made primarily out of wheat and soy.  I really began to notice my symptoms when I started eating meat and dairy again, so looking back, it is very possible that the 10 years of over doing it on processed food may have permeated my gut somewhat.  Even now, I do seem to have a sensitivity to dairy, but I may have always had that.  It's really hard to remember back to when you were a kid, and which foods bothered you.


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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • 9 year Old going through testing
      Yes, ATTITUDE, in all caps, and i am in the field of health care...!
    • TTg IAG > 100 but also Hasimoto's
      Thanks for pointing all that out Gemini! I look forward to finally getting off gluten for good to see how much everything changes.  I never thought about the absorption of my synthroid with all my other issues.  I just see my primary dr. for all my thyroid, perhaps I will ask for a referral to an endo dr for further evaluation and treatment.  Thanks for all the information! 
    • Gluten And Vertigo
      Christiana, I just felt to look at the site. I thought I had clicked to get email alerts. But, actually my email has been 'fritzing' sort of.  Thank you for your note. It is important for my diagnosis. I was diagnosed with chondritis of the collar bone a few months before the fall that resulted in the immobile right arm. The osteo surgeon gave me a cortosol shot that helped a lot. That MRI showed a rotator cuff tear nearly 2/3 thru the strip of tissue that connects the muscle tissue to the bone and makes the shoulder 'rotate' in place.  That was almost a year ago now. I have been learning to be very very mindful about how I use that arm, when I reach, carefully, how I rest it and sleep position. Interesting that I did see a search answer that said ' they are saying now that there could be a connection btn rotator cuff tear and inflammed collar bone. My primary doctor also said I could have an inflammed chest wall that resulted in the chondritis. I remembered that word from a child's diagnosis years ago. That was in his knees and was treated by this same osteo surgeon, by casting the legs over summer holiday, which ended in healed x-rays. That was osteo chondritis desicans. He said then, 'if it is horses, we would have to shoot them.'  I tried to get a blood test three weeks ago for the same antibody we were treating that child with thru his then pediatritian, for rheumatoid antibodies/ recurring strep throat. I had gotten a 'sort of' diagnosis, or agreement from that primary care doctor, allowing me to get the recommended antibiotics (one of the few treatments that it is allowed, because of the need to keep the hearing). But, his new nurse did not relay the request properly. I hate doctor office politics. I hope this newbie is not going to mess with this doctor's little family as well. Last month when researching Meniere's one of the things listed about it was that autoimmune disease is connected to it also. I was hurt before the falls and the inflammation and the collar bone chondritis and the rotator cuff tear. I was very very concerned about it setting off some kind of autoimmune inflammation reaction or worse that can happen when tissue cells are being repaired rapidly and it felt like lots of toxins were being cleansed and processed over a period of many months. The only similar feeling I have ever experienced was when I had a 'deep tissue massage' to release and cleanse a cortisol 'hump' I had after a prolonged period of high family stress situation. Right now, my primary (an O.D. , or osteopath) is working with me. There are two ENTs in this area he offered for Meniere's and has given me Physical Therapy at his complex for Balance Therapy. It is great that that therapist has a MIL that is also dealing with Meniere's and getting exercises from a major hospital complex in the city. I was able to give her some celiac's diagnosis information. Sounded like her MIL and her son were likely to be candidates.  I did not know what the definition was of the term 'vestibular' as in vestibular migraine, another connection to Meniere's. I just typed and then typed 'definition of vestibular.' That had information about the connections btn hearing and sitting positions. I will look up costochondritis. Thank you, again. Best wishes, Anne
    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others. OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
  • 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. Thank You,
      · 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
    • Most Online

    Newest Member