Need help with "positive" blood test results

[Karen Lynn]

Hello,

I'm just a little confused with my test results and whether they're actually indicative of possible celiac, so any advice is really appreciated.

For background, I've had digestive problems for as long as I can remember. When I was a baby, I had difficulty gaining weight, threw up formula constantly, and was pretty colicky. As a teenager, I had embarrassing stomach cramps and abdominal pain, diarrhea, constipation, and bloating (this was really bad and really noisy at times). Those problems have persisted into adulthood (I'm 31). Furthermore, I'm deficient in several vitamins, including b12 and D, and I've tested high for bilirubin before. I've had clay-colored stools, persistent diarrhea (especially in the morning), and my stools regularly float. I've also had neurological problems, including episodes of nystagmus, double vision, headaches that last for weeks, shooting nerve pain on the side of my face with minor temporary hearing loss, and numbness/tingling in hands, not to mention frequent fatigue (usually in the afternoon) and slurred speech and memory/articulation problems. Although an MS specialist identified several signs, others neurologists didn't see those signs (ophthalmologists didn't either), and I've had two negative MRIs. So no idea what's going on there. I've also had problems with my lady parts, specifically polycystic ovaries.

In June, I had a weird stomach issue. I had relatively severe abdominal pain in my lower right side plus severe nausea and decreased appetite. I almost went to the hospital thinking it was my appendix, but the pain never worsened, so I didn't go. Bad nausea persisted for about two weeks, though, and it took about a week for the abdominal pain to completely go away. A few months later I started having episodes that would start with abdominal pain around my bellybutton and end with diarrhea (the oh-my-god-I'm-dying type). For about a week after the pain, I'd get severe nausea, body aches and chills, and a low-grade fever. I had about three of these episodes before I screw it and went to a gastroenterologist.

The gastroenterologist mentioned celiac, among inflammatory conditions, and ordered a blood test and a colonoscopy and endoscopy. A nurse from his office called to say that I had a slightly abnormal celiac panel, with my "antigliadin IGG levels signaling a weak positive." I looked at the actual results, though, and I can't figure anything out. It seems like the only test I had a weak positive for is the one that's not even recommended for testing celiac anymore because it's not sensitive. So, while they say it's an abnormal panel, I'm thinking I should dismiss the positive altogether. Then again, I don't really know what the heck is going on with these tests.

Here's what they read:

IGA IMMUNOGLOBULIN 203 (range 81-463)

DEAMIDATED GLIADIN IGA (0.0-19.9) 6.5

DEAMIDATED GLIADIN IGG (0.0-19.9) 3.0

ANTIGLIADIN IGA 0.0-19.9 (0.0-19.9) 5.8

ANTIGLIADIN IGG 0.0-19.9 (0.0-19.9) 21.1 (only positive result)

TISSUE TRANSGLUT.IGA (0.0-19.9) 5.6

TISSUE TRANSGLUT.IGA 0.0-19.9 1.9

My guess is that these tests don't reveal that I likely have celiac, which is disappointing because so many of those old symptoms (even the neurological ones) could be explained by celiac. But I also know there's a protocol to testing for celiac, and I have no idea if that protocol was used here. The gastroenterologist wants to do a biopsy, which I'm all for, but I also want to go into that endoscopy realistically and not have high expectations. Any advice or opinions about this test would help a lot to acclimate me and give me a better idea of the results and what to expect for the biopsy.

[Karen Lynn]

I should also add that a few weeks ago I developed an itchy rash on both sides of my back. I went to urgent care and was diagnosed with folliculitis. Plus, I bruise easily, and I had muscle cramps and spasms in my hands and feet somewhat regularly. 

[cyclinglady]

You have had an odd result.  Why would your doctor even use the old tests?  I am not a doctor, but has your gallbladder been checked for functionality?  A HIDA scan can check for this.  

Were you consuming gluten daily when you had the testing done?  

Here is a study that might interest you.

Open Original Shared Link

Open Original Shared Link

Ah, this old post on celiac.com about this very topic was very interesting......

 

[Karen Lynn]

Thanks for your reply  

Those studies are immensely helpful because I know now what to expect, and that it that celiac is unlikely. I am wondering if I should even do the colonoscopy/endoscopy. It wouldn't hurt to know what's going on down there, but the preparation and the procedure itself sound awful, so I don't know. 

I've only had my gallbladder checked by an ultrasound, which didn't reveal anything wrong. I could ask my PCP about testing. 

Yes, I was consuming gluten before testing. Had it for breakfast, actually. And I'm not sure why he ordered the old tests, either, but it certainly makes me trust him less. I thought the results looked odd, not what other people's results look like, so I was confused. Should I go to someone else? 

I might reduce or eliminate gluten altogether after the colonoscopy/endoscopy, if I have the procedure. The positive test result could suggest some inflammatory response, so I might see if it helps anyway. I've never gone gluten-free before, so it doesn't hurt to try. 

It's a little frustrating to think you have the answer to something that's been somewhat of a mystery for years and then not have that answer ... 

[cyclinglady]

An ultrasound is  basically looking for gallstones.  I had several.  No stones.  Yet finally, my GB (that would work and not work for 20 years), completely stopped emptying, became infected, and I had emergency surgery after my HIDA scan results of 0% functionality while on a business trip.  It is a family curse!   I suspect that because I was thin and fit, I did not fit the fourF's: forty, fat, fertile , female criteria.  My symptoms were odd and thus, overlooked.  

I would ask for for a HIDA scan.  I would also  recommend finding a celiac savvy GI who follows the American or British GI Association's recommendations for diagnosing celiac disease (correct complete and current blood tests while consuming gluten 12 weeks befor then blood draw).  Plus, taking the correct number of biopsies in the appropriate locations.   A second opinion is always worth it when under going a medical procedure.  I saved my uterus by getting two other opinions.  It is worth every penny going outside your doctor's practice and/or insurance .  My parents taught me that!  

I think my gallbladder could have been saved if my celiac disease had been caught earlier (just my opinion).  

It is hard to remain gluten free without a diagnosis.  I needed one because anemia was my only symptom.  I went in for routine colonoscopy because I hit 50 years.  Hubby went gluten-free 14 years ago per the poor advice of his GPA and my allergist.  It worked though.  But he would be the first to say that I have had it much easier getting tests for things like bone scans., etc.  And support from family and friends.  My kid's doctor does not blink an eye when I ask for her to be tested every two years.  Same goes for my other family members.  But many people are forced into diagnosing themselves because of lame doctors or funding.  I can relate to your frustration.  

Take care!  

[Karen Lynn]

Thank you, CL! I actually never even thought about my gallbladder, but that makes sense. I have an appointment with my PCP in April, right before the colonoscopy/endoscopy. I'll bring up my gallbladder and ask if she knows a good celiac-savvy doctor just in case that's still behind all of this. 

 

[ironictruth]

Just a fyi, my brother was confirmed Celiac by biopsy and his blood work was always normal. I have The gene and only slightly elevated blood work on one test. my recent biopsy in January was negative after a six-week gluten challenge after being gluten-free for 8 months. so I resumed eating gluten and have been getting crazy s*** happening the last 6 weeks or so.

I have been to the ER and I have seen a cardiologist and I'm finally getting another appointment with the GI doctor. I also suspected MS because I have a half-sister with it. I like you have started to get funky vision, feelings like I'm going to pass out, belching, chest pain, back pain, heart palps, variances in blood pressure, sudden onset of numbness in hands mostly when I'm sleeping (position does not matter), pain shooting in my neck and into my ear (for 5 weeks now), paranasal sinus disease, plus I have been gluten-free almost 2 weeks now, at least I think, and have spent most of this morning on the toilet. sorry for too much information. I am totally hanging out with salt, coconut water, regular water (too much coconut water is bad) and any gluten free protein Source at this point.

I read recently that the vagus nerve has a relationship between your gut and your central nervous system. irritating this nerve can cause all sorts of strange issues to occur as it is a parasympathetic response. that means while there may not be anything wrong with your heart or your braIn on tests, your central nervous system thinks that there is something wrong. Google vagus nerve and ceLiac. also Google acid reflux and vagus nerve.

My Celiac brother also had issues with his sinuses and ears when he was eating gluten.

so when one of the doc's diagnoses you with anxiety, and you know your body, keep searching for an answer. There are some Studies correlating MS and celiac disease. You may have neither, you may have both, or one or the other. 

I do not think it is a bad thing that your doctor ordered the old Gliadin tests as long as he also ordered the new DGP ones. My GI doctor stopped using the old tests a long time ago because they were not specific. However, he never knew that new ones existed which replaced the old ones until I told him and showed him the Mayo clinic website. So he has just not been ordering the new tests for god-knows-how-long! I think they've been around for about 10 years now.

good luck and keep us posted! 

 

[Karen Lynn]

Yeah, since the last MRI, I've stopped trying to figure out what's going on with my brain and stopped insisting I have MS. This has made everything easier to deal with, especially since I haven't had any major neurological episodes like the nystagmus since. I still have brain fog, tingles, twitches, spasms, and double vision sometimes, but nothing life-altering (except maybe the fog). 

Unfortunaltely, this positive antibody result is making me think about the neurological stuff again. I read about the connection between celiac and MS, too, and that people with MS frequently test positive for the same antibodies, which is worrisome. But I also didn't realize celiac can mimic MS so much, so maybe I do have celiac and it'll explain everything. We'll just have to see. 

I will say that I've been tracking my reactions to food, and I have either bloating or diarrhea nearly every time I eat something with gluten in it. I wrote earlier that I have diarrhea every morning immediately after I eat. Well, I eat toast or a granola bar for breakfast that has gluten in it. Pizza and beer (which I love) particularly have an effect on me. I had no idea. 

 

[Karen Lynn]

Also, can celiac cause an abnormal ekg? I had an ekg done as a precaution for the colonoscopy/endoscopy, and apparently it was abnormal. (Of course, no one told me, and I found out only through calling a few weeks later to ask why they were referring me to a PCP.) I don't know what was abnormal, just that it was. I

 

[ironictruth]

I know this must be frustrating for you.follow up with your doctor and get a stress test and go see a cardiologist. Both my brother and I thought we had heart issues and we do not. it was just a lot of odd chest pain with gluten. However you might. my ex had an abnormal EKG and has a fairly common heart problem. Make sure you are comfortable with your doctor and that they are listening to you. Also try to find a GI dr. with An Understanding of celiac disease. MY GI does not and now I have to switch To one that does. 

it is hard to strike a balance between self advocacy and driving yourself nuts! unfortunately a lot of doctors are clueless.however by the same, those of us self advocating Do not have medical degrees. continue on until you find an answer.

I have been feeling like the verge of passing out with all sorts of strange s*** happening the last couple of months. so it is very bothersome and I understand where you're coming from. open up the dialogue with your primary care.

[Karen Lynn]

It is very frustrating, especially because contact with the doctor's office is poor, and they're not accommodating me very well. I'll just be patient and wait until I can meet with a doctor. 

I'm sorry to hear about your health issues. I hope they get resolved as well :-/

[Karen Lynn]

Finished my endoscopy yesterday, and the doctor said that everything looked normal but that the biopsies will give a better picture of what's going on. They tested for h. pylori, too. All I know is I started a gluten-free diet yesterday, and today was one of the few mornings I haven't had loose stools in the morning immediately after I eat. (I usually have a granola bar, toast, or cereal for breakfast.) So there's that! I doubt I have intestinal damage, but I do think my body reacts to gluten. So, to feel better, I'll probably eliminate gluten from my diet as best I can. 

[Gemini]

On 3/11/2016 at 10:42 PM, Karen Lynn said:

Unfortunaltely, this positive antibody result is making me think about the neurological stuff again. I read about the connection between celiac and MS, too, and that people with MS frequently test positive for the same antibodies, which is worrisome. But I also didn't realize celiac can mimic MS so much, so maybe I do have celiac and it'll explain everything. We'll just have to see. 

 

 

Karen......I know this is an older post you made but I wanted to make a comment on what you said in this paragraph. MS would not raise Antigliadin antibodies in someone as that only elevates with Celiac Disease from the gluten you are eating in your diet.  What it might raise is the tTg numbers as MS is an autoimmune disease  and tTg can be elevated by some AI diseases other than Celiac.  Your tTg was normal.

Good luck with the testing results but I think you know you must eat gluten free.  You could very well have NCGI and that will give you the same symptoms without the villi damage. Whatever happens, stay gluten free and I bet many of your symptoms will subside!

 

[Karen Lynn]

Oh, good to know! Thanks! That's actually a relief.

[Galixie]

You mentioned PCOS and also that you're B12 deficient and that rang some bells with me. Are you getting treated for the B12 deficiency?

I ask because I was once diagnosed with 'atypical PCOS' (I had small peripheral cysts on each ovary but normal hormone levels). It was later discovered that my B12 was low and, after several months of B12 injections, my PCOS simply righted itself. Also, B12 deficiency can cause a whole host of neurological problems.

I wonder if your doctor included the AGA tests because those are still the only tests that can detect some NCGS people. I only tested positive on an AGA IgA test and it had me going around in circles for a long time, so I understand what it's like to not know for sure. It sounds like you've had worse symptoms than I have. I ended up going off of gluten for almost 4 months, didn't think anything had changed at all, went back on it for two weeks and discovered that my dizzy spells (which I had never associated with gluten) came back within days. In the end, if you feel better off of gluten, it's best to stay off of gluten.

If you're taking tablets for B12, you might want to try an injection to see if it works better. Absorbing B12 through the digestive system is ridiculously complex and problems can happen at multiple stages in the process. Some people even have genetic mutations that keep the body from absorbing enough B12. The key is balance. B12 works best when there is also enough folic acid and iron for blood production.

[ChiaChick]

Hi Karen,

Thanks for sharing. Hopefully you will have the result of the biopsy soon. Yay for starting the gluten free diet. Hopefully you will be feeling a lot better very soon. I too have started gluten free today, so we can compare notes. lol Good luck with it all.  

[Karen Lynn]

Galaxie, 

So, I first went to the gyn a few years ago for breakthrough bleeding and pain. They did an ultrasound and found a bleeding cyst and polycystic ovaries. My gyn, though, only tested my thyroid and not my hormones. Why, I have no idea. I didn't know anything about PCOS until years later, and when I asked her if the ultrasound showed I could have it, she said, "yes, you likely do, but it's only a problem if you're trying to conceive." She prescribed me YAZ and sent me on my way. A few weeks ago, I decided to go off BC for a while to get a blood test and see if my hormones are out of whack. I don't have hair loss or growth, I'm thin (although I carry weight around my midsection), but I've had persistent cystic acne for about ten years. So I have no idea if I have the syndrome or just polycsystic ovaries, but I guess I'll find out soon. 

The B12 deficiency wasn't significant, although it could definitely have contributed to neurological problems. The neuro I saw last told me to take supplements orally, which (cough) I've stopped doing. I had no idea that there's a correlation between B12 and PCOS. Now I'm thinking that between going gluten free (which many people with PCOS has said helps with symptoms) and, after reading your comments, taking B12 again (possibly through an injection), that will probably clear up. Very interesting. 

Thank you for the information!

[Karen Lynn]

ChiChick

Thank you, and good luck!

The funniest part of all of this is that my dad has been getting on my case about gluten for years because he's very sensitive to it. I always rolled my eyes, thinking it was just health nut gobblety gook and my dad overreacting. Well, for the last three days, I haven't eaten gluten, and I've felt great. No diarrhea, no bloating, no stomach cramps, less brain fog. I am SO HUNGRY, but that's okay. And I've kept eating everything else, including dairy. Anyway, I'm realizing I should've listened to my dad long ago, haha. 

[Karen Lynn]

As expected, my biopsy came back negative for Celiac. It did reveal gastritis, and while they want to prescribe medication, I've decided to forgo it and stick to a mostly gluten-free, gluten-lite diet and to avoid acidic foods. (Seriously, I can't eat pizza and pasta anymore without being miserable.) I do think I'm a little sensitive to gluten (I had a muffin last night this morning and paid for it today), but at least I don't have an autoimmune disease and gut damage

Thanks, everyone, for you replies!

[Galixie]

20 hours ago, Karen Lynn said:

As expected, my biopsy came back negative for Celiac. It did reveal gastritis, and while they want to prescribe medication, I've decided to forgo it and stick to a mostly gluten-free, gluten-lite diet and to avoid acidic foods. (Seriously, I can't eat pizza and pasta anymore without being miserable.) I do think I'm a little sensitive to gluten (I had a muffin last night this morning and paid for it today), but at least I don't have an autoimmune disease and gut damage

Thanks, everyone, for you replies!

You'll want to keep an eye on all your vitamin levels, as absorption problems are quite common with gastritis. You've probably already looked it up, but this is the WebMD page on gastritis. Open Original Shared Link  It's not the best article as they mention 'treating' it with antacids which is pretty much the opposite of helpful. (Open Original Shared Link

If the medication they were going to prescribe is an antibiotic, you might want to reconsider. If you have H. pylori, an antibiotic is the only sure way to get rid of it. If you don't get rid of the bacteria, the B12 deficiency will worsen.