A Word Of Caution To Preliminary/self Celiac Diagnosis

[mmarksbury]

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 situation...it 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 23andme.com 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.

 

[LauraTX]

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!    LOL

[NoGlutenCooties]

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? 

[GFinDC]

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
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

Gliadin Triggers Innate Immune Reaction in Celiac and Non-celiac Individuals
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html
 

[glux]

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.

[bartfull]

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...

[mmarksbury]

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.