Weak Positives?

[Kyle4]

Hello All,

I'm a 29 year old male and recently saw a gastro a couple weeks ago. The primary reason was constipation that was getting progressively worse despite adequate fiber/water intake as well as using stool softener a couple times a week. I've also had some recent pain on both sides in the lower rib area that I can feel a little in my back too. I'm embarrassed to say that I waited about 5 years with the constipation problem coming off and on before sucking it up to see a specialist. 

As a child and young adult I had gone through many doctors visits for issues like fainting, weak appetite, bowel movements preceded by intense cramping, fatigue, etc.. My bloodwork always came back normal and the doctors I saw never came up with anything. Throughout this time I had been diagnosed with ADHD (Adderall cut through the mental fog and gave me a quick bowel movement every morning, though I haven't taken it in years). In my 20s I started having severe panic attacks for no reason I could discern and I was given Alprazolam to use as needed. The numerous empty handed doctors visits as a child combined with the anxiety disorder diagnosis convinced me I was a hypochondriac and that any symptom I experienced was not a big deal.

The gastro set me up for a colonoscopy (which is still a couple weeks out). He also noticed a low b vitamin level (250 pg/ml) from my last physical and sent me off for a blood test to "rule out Celiac's" and recheck the vitamin level.

The office called the next day and informed me that I had a "weak positive" result for Celiac's. They added an endoscopy to the already scheduled colonoscopy, but I wasn't really given a lot of info on what each of these tests mean. 

tTG IGG - 8.1 (Weak Positive, 6-9)

tTG IGA - 1.2 (Negative, 0-4)

Deamidated Gliadin AB, IgA - 25.4 (Weak Positive, 20-30)

Deamidated Gliadin AB, IgG - 2.3 (Negative, 0-20)

Immunoglobulin A - 218 (Normal 70-400)

 

My B12 is back up to 340 pg/ml. How indicative of Celiac's are these results? I would like to go gluten-free as soon as possible if this is strong evidence that it will help. Any advice would be much appreciated!

[tessa25]

Weak positive means you should have an endoscopy done (with several biopsies) to see if you definitely have celiac. You have to continue eating gluten until the testing is done. If the biopsies don't confirm celiac you can always try a strict gluten free diet for a couple of months to see if you feel better.

[Jmg]

Hello and welcome

Tessa has said it all! Stay on gluten through the testing process so you get as accurate a result as possible. If it's celiac the endoscopy is the best chance of diagnosing it. But remember if the test is negative there's nothing to lose and potentially a great deal to gain from giving the gluten free diet a thorough and proper try. 

Lot's of help and advice available here if you need it also!

Best of luck

[Divergent]

I'd say you're on the right track right now.

To echo the previous comments, keep eating gluten on a daily basis until your endoscopy. They'll take a look around your duodenum. Make sure they plan to take biopsies, as they may or may not see notable changes visually, but the biopsies are where they can look closely for the kind of damage that is characteristic of celiac. The blood tests alone are not a diagnosis, but combined with other indicators, may contribute to one.

I'm a guy your age and was recently diagnosed, although it's a bit of an ongoing saga (sort of waiting for a post-diet-change check of the bloodwork and endoscopy as the final guarantee). I empathize with your hypochondriac comment; basically, for the last half of my life, the docs only ever saw a very small list of own complaints because I felt like the ones I did make never went very far. If I've noticed anything since changing my diet in the last two months, it's that my body's response to things that would normally make me anxious is much more reasonable. Anxiety can definitely be a manifestation of celiac.

Please keep us updated, I'm curious how you get along as I identify a lot with what you've written. I also had lower rib pain, intense cramping that precedes bowel movements, low B12... it's all there! I hope you get some answers.

[Kyle4]

Thanks for the responses so far!

I stopped gluten a couple days ago because of how uncomfortable I was getting. I didn't have much of an appetite and felt really stuffed. The pain in my sides was getting really bad and I felt like if I didn't get some relief soon I would end up in the hospital. Last time I intentionally ate gluten was Monday morning.

This appeared to do the trick. Everything started moving Wednesday and this morning I had a perfectly normal bowel movement, which hasn't happened in longer than I can remember. I'm nowhere close to 100% but my stools are no longer thin which was one of my biggest concerns.

I did some research on the tests but didn't really come away with an idea of how strongly they point to Celiac (or any other potential conditions) based on my results. I think I'll just wait and let this play out with the endoscopy.

Tomorrow I'll start "glutening" again as I'm only 8 days away from biopsy and I don't want to throw off the results any more than I probably already have. I will let everyone know how it turns out.

[LilyR]

Hi everyone. I am new here.  Kyle4, I was just told I was tested as a low positive for celiac too.  I did already had an endoscopy prior to bloodwork, but celiac was not even mentioned during that.  I was told whatever biopsy they did came back fine (I assumed it was for cancer and/or checking for h.pylori).  Does anyone know if they always check for celiac during endoscopies? I don't think they did on mine. Or at least they didn't mention it.  Anyway,  since I had a low positive result in the bloodwork, the dr just had me go in for more bloodwork to check other markers for celiac. I am waiting to hear back from that.  I really don't want to have it, yet I also would be relieved to finally get an answer to what is causing all my problems and have the answer to help it get better (going gluten-free).  So I am sort of torn at what I hope to hear back for the results.  I started getting extremely sick in Feb with stomach issues and have had a fever since then too.  I've had a CT scan, an ultra sound to check gall bladder, and then the endoscopy.  All they found was some acid reflux damage and were treating me for that, but I still am having awful symptoms.  I have an appt with rheumatology about the fever, fatigue, and other issues.  My gastro dr said celiac can cause fatigue, but not fever.  So I am not sure if I have celiac, or maybe I do, along with something else they have not figured out yet.  It sure has been a very uncomfortable and sick few months.  I will be curious to see what your results come back with, Kyle4.  The waiting is so hard....

[tessa25]

Call the gastro's office and ask for copies of your test results. The endoscopy report will say if biopsies were done in the duodenum and small intestine.

 

[LilyR]

Thanks, Tessa25.  I will do that. 

[Kyle4]

Had my endoscopy and colonoscopy Friday. Dr said everything went well and there was no obvious visible damage, so that's good. I did have a really strange reaction to the anesthesia about 6 hours after the procedure. Started getting a fever over 100 and other flu like symptoms but Tylenol took care of it and I felt fine the next morning.

I'm going gluten free for a few months to see if I notice any improvement, regardless of whether this biopsy ends up positive or negative.

[Kyle4]

My biopsy came back negative today. Are there any other related conditions or reasons that could explain the false positive TTG IGG and/or DGP IGA? It bothers me that I have symptoms and apparently elevated antibodies yet no official diagnosis. 

[ironictruth]

7 hours ago, Kyle4 said:

My biopsy came back negative today. Are there any other related conditions or reasons that could explain the false positive TTG IGG and/or DGP IGA? It bothers me that I have symptoms and apparently elevated antibodies yet no official diagnosis. 

Very frustrating, I know. 

Yes, other things can elevate TTG and DGP. It just seems strange that both were positive though. Have you had them repeated? 

When you say the biopsy was negative, do you have a copy? They typically only diagnose celiac in the later stages of damage. Sometimes there may be an increase in lymphocytes prior to blunting.  It used to be the case that people with Celiac would suffer for years before a diagnosis.  By the time folks were diagnosed they had some pretty serious damage to the intestine.  now some doctors are getting better at recognizing the possibility of gluten Related Disorders and ordering the testing earlier on.  this could be the case with you. I would suggest repeating the serology if doctor will be willing to do so.  I am also assuming you had the genetic test done?

[tessa25]

Since celiac testing is done there's nothing preventing you from going on a strict gluten free diet for a couple of months to see if you get better. You could be in the early stages of celiac where you don't have enough damage for a diagnosis or you could have issues further down the pipes. The easiest way to go gluten free is to eat simple foods like meat, veggies, potatoes, eggs, cheese for a few months.

[Kyle4]

I haven't had the blood tests repeated and never had the genetic testing performed. It was only 3-4 weeks ago that I had the first test. I didn't know anything about Celiac prior to my gastro's suggestion that I be tested for it. No copy of the biopsy results yet, but after finding out that I was near-deficient in vitamin B12 from last years physical (without my GP telling me) I will be making sure to get copies of all tests.

I have a follow up in 2 months but I haven't received any advice or info from the doc. Hopefully he'll retest my DGP and TTG. I've gone completely gluten free the past week but it's too early to tell if its working. The fact that I'm not constipated yet is a good sign.

The biggest question in my mind right now is Hashi's. My mom has it and a lot of my symptoms overlap. I'll ask my doc what he thinks.