I'll try to keep it brief - I was tested for celiac disease several years ago. IgG titer (can't remember specific name) came back positive, but biopsies appeared to be normal. No celiac disease diagnosed, just a sensitivity. Since then, I've been back and forth between full gluten and limited gluten diets. By limited, I mean that I chose gluten-free when I could but I did not worry about cross contamination or trace amounts and I allowed myself a cheat here and there. I would have a few bites of pasta, a slice of pizza or a couple of cookies every few days or so. I went gluten-free for 3 weeks because I had IgG allergy testing that showed a wheat/gluten allergy, but then I just ended up going back to a gluten limited diet. I saw a allergy/immunology specialist to find out more about the wheat/gluten (and other various food) "allergies". His opinion was that the type of allergy testing that was done (by a different provider) was more indicative of an intollerance rather than a true allergy. He recommended that since I do already have RA and every GI symptom (besides bleeding) there is, that I should go ahead and repeat the celiac panel. He recommended I go full gluten for 2 weeks before doing the bloodwork. It has been a little over 2 weeks now, I have had a LOT of gluten filled meals. I have something with gluten in it several times a day. Digestively, I have been paying for it dearly.
I'm just curious to hear opinions about going forward with the blood test after going full gluten for just 2 weeks? I've done a little reasearch and know that some recommend at least 6wks and some say 6mos, but those recommendations are for after being strict gluten-free, whereas I was just limited.
If you want to be sure that you have consumed enough gluten to create high enough levels of antibodies to register a positive test, then you might want to continue your gluten challenge a few more weeks. Two weeks of heavy gluten eating might not be enough, and then if you get negative results, your doctor may not be willing to retest for celiac disease after a longer gluten challenge. If your doctor is willing to retest if you get negative results, then I say go for the early testing but if this is a one shot deal, I think you might want to postpone testing for 3 or so more weeks... if your body can handle it.
The only titre I know of for celiac testing is the EMA (endomysial antibodies), but they usually only run the EMA IgA version and not the EMA IgG version. If that was the test you had positive, then you do have celiac disease. The EMA is almost 100% specific to celiac disease, meaning that almost every positive test that occurs is due to celiac disease and not other causes.
The EMA, DGP (deaminated gliadin peptide antibodies), and tTG (anti-tissue transglutiminase antinbodies) all indicate that an attempt is being made by the immune system to inflict damage onto the small intestines. Those tests are never positive due to non-celiac gluten intolerance (NCGI). People with NCGI have all of the same symptoms as celiac disease BUT they do not have intestinal damage. If you had a positive test of one of these, you have celiac disease.
Anti-gliadin antibodies (AGA) is an older test that shows sensitivity to gliadin. It is thought by some to work for bothe NCGI sufferers and those with celiac disease. It is not a very accurate test though and is not used as frequently.
You might want to look over your biopsy report too. sometimes there is the beginnings of damage (Marsh 1 or 2) but it's not enough for a doctor to diagnose you... they need you to damage yourself more before they attach a label to the problem. Sometimes damage is missed too. The small intestines has a surface area of a tennis court... that's a lot of space to check over.
Regardless of the test results, I think you need to be gluten-free. You have the double whammy of having a wheat allergy and (at the very least) NCGI or possibly celiac disease. If you keep eating small amounts of gluten or not worrying about cc, you could end up permanently damaged or sick with other autoimmune diseases or cancer. The "gluten lite" diet that you have been doing won't be enough to ensure a healthy, pain free life.
Good luck with the testing. I hope you get clear answers. Feel free to bring your results to us (and your past blood and biopsy results) and we can help you interpret them - sometimes an extra set of eyes is helpful.
Thank you for your reply. I went ahead with getting the bloodwork done. The Dr who ordered it was an Allergist and I was also having some bloodwork done for a possible IgE flaxseed allergy. It was sort of on a whim to get the celiac panel done right now so its not a one time shot. I've been waiting to get some finances in order to go back to a GI doctor, so even if this test comes back negative and I still feel strongly about it, I will probably eventually get it done again but I will be sure to be on gluten for longer and possibly request to have the genetic testing done as well. Besides my GI symptoms, there are several other factors that keep briging me back to celiac disease. For starters, when I had the original celiac disease testing done, I also had a positive ANA which sent me to a rheumatolgist who diagnosed my rheumatoid arthritis. Having one autoimmune disorder increases my risk for having another. My daughter also had a titre come back positive but her biopsy was negative. Last year I saw my Dr about my anxiety, depression and foggy brain issues who did some bloodwork and found I had a vitamin D deficiency. I just want to know for sure if I truely have celiac disease and need to be on a strict gluten-free diet or if it is NCGI then maybe I can just go gluten light.
The tests I had done in 2006 were:
Gliadin Antibody (IGA) <3
Gliadin Antibody (IGG) > 24
value (same for both)
<11 negative, 11-17 equivocal, > 17 positive
My endoscopy showed a hiatus hernia but everything appeared to be normal. I dont know how many biopsies they took. The report says "Normal stomach. This was biopsied.; Normal stomach. This was biopsied.; Normal examined duodenum. This was biopsied." All the biopsies came back normal other than some "non-specific" inflammation.
I will keep you posted whenever I get my most recent results back. Thanks again for taking the time to respond.
A positive AGA IgG, along with symptoms and other autoimmune disorders makes it pretty likely that you have celiac disease, even if the doctors couldn't find the damaged villi. When all of your testing is complete, even if you get all negatives, I highly suggest that you go gluten-free. Those with NCGI should also stay gluten-free as they have all the same symptoms and inflammation as a celiac does except for the villi damage - and that villi damage is just another symptom, it isn't the cause of all of our other health problems. Gluten lite won't be enough. KWIM?
Inflammation is sometimes the early stages of damage for celiac disease. I think they rate it as Marsh 1. A positive ANA can be caused, in part, by celiac disease as well...
I've read that the vilii damage can be easily missed and false negatives are common, as well as damage being possible at any point in the digestive tract, not just the upper area of the small intestines.
The duodenum is like the front hallway to the small intestine house. If they only biopsied two areas in the stomach and one in the doudenum, my thought is that doesn't count as having been tested at all. Vilii aren't even present in the stomach!
But I can say this. Prior to going gluten free I had phases in my life where I had more gluten and those that had less (depending on jobs that dictated how often I ate out). By comparison, the low-gluten phases were much better and didn't have much in the way of digestive issues, but did still come with plenty of symptoms that I didn't even recognize until I went completely gluten free. Not to mention that I didn't even realize that I had been going through detox and retox symptoms on a regular basis.
Completely gluten free is so fabulous comparatively that I'll never go back. To be blunt, having diarrhea is not normal ... or at least, it doesn't have to be.
All I have to do is think of some of the health problems I see in my older relatives to realize that I definitely want to avoid any more damage to my body.
Grrr! I got a call from the Dr's office this afternoon. But all she had was a "message" from the Dr that my Celiac Panel and my IgE flaxseed allergy tests both came back negative. "Oh, and your IgA was minimally low, but clinically insignificant so there is no need to be concerned." I asked for the values. She said she didn't have my actual report because the Dr hasn't released it yet, she only had his message. So I requested to pick up a copy tomorrow afternoon. Ugh! This sucks! I was all prepared to accept a negative result based on my gluten intake possibly not being quite long enough to get an accurate reading. But she just had to say "low IgA" so now I'm questioning the accuracy of this blood test AND the testing I had done 7 years ago. I'm not even sure WHAT tests they performed. The lab's website under the test code says the main test is the tTG IgA and IF that test is positive then they do the Endomysial AB IgA test, IF that is positive then they do the Endomysial AB IgG test. They also do the total IgA and IF that less than the lower limit THEN they do the tTG IgG. I guess I will have to wait until tomorrow to see what tests they actually did and obsess over the values. I will be sure to update and see what others here think. How "low" does the IgA need to be to affect the accuracy of the testing?
Regardless of what the blood tests say, I am leaning towards remaining on a gluten intake (2 slices bread daily) for 3-6 months and going to another GI. I would like to get the endo-biopsies at least one more time before I am comfortable enough to rule out true celiac disease. I may also request the genetic testing at that time too. I'm just a person that has to know for sure. This time I will be sure to do some research to find a Dr in my area experienced with celiac disease/NCGI and Leaky Gut. I also suspect I may have a Leaky Gut problem too.
So sorry you weren't able to get clear answers - I know how frustrating that is. I was in a similar situation with a positive ANA (for unknown reasons), celiac in the family, tons of symptoms for decades, a bunch of borderline vitamin deficiencies, and a gluten-light diet for years that made it hard to tell whether my biopsy results were reliable. Even my genetic test wasn't helpful - it showed that celiac is possible but unlikely.
However, I can say that going from gluten-light to totally gluten-free made a HUGE difference. I'd estimate that I only ate about10% of the gluten of the average American beforehand, and I still felt awful all the time. Cutting out the remaining 10% made all the difference in the world. I totally understand your desire to know for sure, even if that means continuing to eat gluten for longer and going to a different doctor. Once that's done, though, you may really want to give a strict gluten-free diet a try for a few months, even if the tests are negative. I have to admit, I was skeptical about the idea that gluten could really be responsible for years of misery when all my celiac tests were negative...but experience has proven that it was! For me, at least, the problems caused by gluten aren't dose-related in the way I expected: the difference between 100% gluten-free and just 99% is tremendous, whereas the difference between a little gluten and a lot isn't nearly as dramatic.
Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.
Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge.
(hugs) Waiting sucks. I 've been waiting for some (unrelated to celiac) test results for a few weeks now and I won't get my results for two more weeks - I'm going a bit batty waiting. It really is hard to put it from your mind when it is affecting your life.
If you can hang in there for another month of gluten challenge in order to retest, I wish you lots of luck on the next round of tests. Perhaps before going to see your doctor, you find some studies to show him about how the tTG IgA is not 100% sensitive for celiac and how the IgA affects it's validity. Maybe that will push him to do a bit of work and find a DGP test for you too... maybe. If not, a different doctor to retest tTG IgA might be your only option.
I wouldn't worry too much about the EMA testing. The EMA is very similar to the tTG tests except it shows up once the damage is a bit more advanced. i don't think I have ever seen a positive EMA without a positive tTG. It could happen but I don't remember seeing it after over a year on this forum.
Besides, most celiacs only have one or two positive tests, it is pretty rare to be positive in everything. For that reason, once you are done testing, I would take that positive AGA tests, go gluten-free, and call yourself a celiac.