• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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
0
PrairieGal

I Don't Understand My Test Results... Help!

Rate this topic

Recommended Posts

Hello,

I have been reading some of the posts here and think that I am one of those who is totally confused about what my celiac screening panel results actually mean. To start - I have a family history of celiac as my father was dx late in life but likely had symptoms for at least 20 years before. When my father was dx, I had the standard blood tests to check and all I can remember from that time (8 years ago) is that one, or possibly more, of the tests was positive enough for the doc to recommend that I see a specialist. The specialist said I didn't have the "classic" symptoms therefore a biopsy was not needed. At the time, I was young and thought "ok that's fine with me, I will keep eating gluten, yay".

 

Now, however, it's a different story. After spending most of my 20s with various GI issues and the IBS diagnosis, I decided to try gluten free and did start to feel better generally. I did that for about 2 years and then thought that I should probably get a real diagnosis. I started eating gluten again off and on for a year and then did the gluten challenge for 6 weeks and had a screen of tests done last month.

 

So...my results are that the DGP IgA was positive, but a weak positive, and the other tests were not above the normal range.  My current doc (not the one who did the tests 8 years ago) thinks that I should keep eating gluten and we will re-screen in 4-6 months. I am ok with that because I want to know for sure if I have it. But my question is does this DGP IgA test indicate that I am re-damaging my gut by eating gluten? I don't understand what it means, especially because the other tests were not really high. What do we know about the DGP IgA tests?

Share this post


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


I would, at this point, suggest doing the biopsy.

 

The thing about those blood tests is that one out of the panel can come back positive, and you can still have celiac. I'm suggesting the biopsy because of your family history plus the positive blood test.

 

I'm not very knowledgeable with the DGP IGA, but i do know that it is quite sensitive for celiac.

Share this post


Link to post
Share on other sites

You've tested positive now, and positive years ago, and you have it in the family... that is really pointing towards celiac disease. The DGP IgA is 93-96% specific to celiac disease according to the World Gastroenterology Organisation Global Guidelines. That is pretty specific, especially if you had another different type of positive test in the past.  http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

It is not uncommon to be positive in one test and not the other.  I think that's why they run so many different types of tests - so they catch most people. If you are still in doubt, get the endoscopic biopsy like Shadowicewolf suggested. Just remember that the damaged pateches can be missed and you can get a false negative... A false positive test is much much more rare than a false negative test when it comes to celiac testing.

 

Ideally, try not to wait half a year before going gluten-free. As a celiac, you could be doing continuing damage to your health if you continue to eat gluten.

 

Best wishes in whatever you decide.

Share this post


Link to post
Share on other sites

I'm a newbie here, but here's my two cents.  Perhaps, it will help you!  

 

I have had Hashimoto's thyroiditis and mild anemia on and off for years.  During a routine colonoscopy, my gastro wanted to test me for Celiac Disease.  My blood test showed "mildly abnormal celiac result".  My husband has been gluten-free for 12 years, so I baked cookies for myself, but always served a gluten free dinner, etc.  Prior to my endoscopy I went crazy eating wheat (a loaf of good bread a day, I kid you not!) By the time of the procedure, I developed abdominal problems (lead feeling in tummy, indigestion, etc.)  My biopsy showed moderate to severe damage to my villi! 

 

I'm feeling better finally after six weeks of a gluten-free diet, but I'm hoping I didn't do permanent damage.  I only did the endoscopy because 1) I have a daughter who has  two parents who can't eat gluten) and 2) I needed support and wanted to help extended family. 

Share this post


Link to post
Share on other sites

I'm a newbie here, but here's my two cents.  Perhaps, it will help you!  

 

I have had Hashimoto's thyroiditis and mild anemia on and off for years.  During a routine colonoscopy, my gastro wanted to test me for Celiac Disease.  My blood test showed "mildly abnormal celiac result".  My husband has been gluten-free for 12 years, so I baked cookies for myself, but always served a gluten free dinner, etc.  Prior to my endoscopy I went crazy eating wheat (a loaf of good bread a day, I kid you not!) By the time of the procedure, I developed abdominal problems (lead feeling in tummy, indigestion, etc.)  My biopsy showed moderate to severe damage to my villi! 

 

I'm feeling better finally after six weeks of a gluten-free diet, but I'm hoping I didn't do permanent damage.  I only did the endoscopy because 1) I have a daughter who has  two parents who can't eat gluten) and 2) I needed support and wanted to help extended family. 

 

You've tested positive now, and positive years ago, and you have it in the family... that is really pointing towards celiac disease. The DGP IgA is 93-96% specific to celiac disease according to the World Gastroenterology Organisation Global Guidelines. That is pretty specific, especially if you had another different type of positive test in the past.  http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

It is not uncommon to be positive in one test and not the other.  I think that's why they run so many different types of tests - so they catch most people. If you are still in doubt, get the endoscopic biopsy like Shadowicewolf suggested. Just remember that the damaged pateches can be missed and you can get a false negative... A false positive test is much much more rare than a false negative test when it comes to celiac testing.

 

Ideally, try not to wait half a year before going gluten-free. As a celiac, you could be doing continuing damage to your health if you continue to eat gluten.

 

Best wishes in whatever you decide.

Thank you so much for your replies! The thing is that I don't know which test I was positive for in the past or that it was even positive (but I think it was), because it was so long ago and I don't have the results, it's just that I remember being referred to a specialist who didn't think a biopsy was needed then.

 

And this most recent time, I am "just" over the normal range - I was a 10.8 when 9.9 is the max upper limit for normal.  As much as I would like to go back to gluten free and never look back, I'm not sure that result is enough to eliminate the little bit of doubt in my mind and it's not enough for my family doc to strongly recommend a biopsy (according to the doc). I have been having abdominal symptoms on and off this past year, but that started before I was eating gluten regularly, when I was having it once or twice a month. it's hard to connect the two, as much as I would like to, because I do believe that there is something going on with my diet, but the medical system requires more "proof". Because I already tried gluten free for a few years, but didn't have a diagnosis, I feel like I need to get some more confirmation before doing it again.  

 

The family history is also a big red flag, I agree. I don't want to end up like my dad who didn't "feel right" for DECADES but the doctors could never identify what was going on!!I am thinking of eating gluten for another 6 weeks, which would put me at just over 3 months of eating it and then get another batch of tests done. Waiting until I have been eating it for 6 months seems like wayyy too long but I have read that some recommendations for the "gluten challenge" are up to 3 months, and I definitely didn't wait that long before being tested recently.

Share this post


Link to post
Share on other sites
Ads by Google:


I understand wanting to be really sure - I was the same way.  :) Three months of gluten (1-4 slices of bread or equivalant per day) is very reasonable amount of time to get your antibodies back up. I hope you don't feel poorly over the next few weeks.  Good luck.

 

BTW, eating gluten every couple of weeks is enough to keep many celiacs feeling pretty ill. When a celiac consumes gluten, it causes autoantibodies to act up for a while - not just at that meal but for days or even weeks... and then it takes time for the intestinal wounds to heal. If you do end up gluten-free, try to get it as close to 100% gluten-free as possible or you may not actually reap any of the health benefits.  Best wishes.  :)

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

  • Forum Statistics

    • Total Topics
      108,916
    • Total Posts
      943,494
  • Member Statistics

    • Total Members
      67,098
    • Most Online
      3,093

    Newest Member
    Skiscooby
    Joined
  • Popular Now

  • Topics

  • Posts

    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
  • Upcoming Events