Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New And Confused By Doctor


vtphd

Recommended Posts

vtphd Newbie

So I am new! I recently had a Celiac panel test run by Labcorp on a bit of a whim. I have had "IBS" (mainly D) for several years but the episodes are few and far between and have been treated with Elavil 5mg a night. My new primary said, hey let's just do this test as 1)it's something people are being commonly diagnosed with these days and 2)you've never had it before and it seems you suffer sometimes. So long story short, here are my test results (he also did ESR, ferritin, CBC, etc. all normal) :huh:

Immunoglobulin A -- 229 (range 68-378)

Endomysial IgA- negative

tTG-IgG Ab -- 3.9 (range under 20 negative)

tTG-IgA Ab -- 8.9 (range under 20 negative)

Gliadin Peptide Ab IgG --7.0 (range under 20 negative)

Gliadin Peptide Ab IgA -- 20.9 (positive for "equivocal")***

So the Gliadin IgA was high (but the range said over 25 for "positive". My doctor said with these results I am negative for anything... what do you think? Why would I get a positive if I didn't have something going on :blink:

Thanks for looking and advising, I've been trying to determine from the internet but don't understand all this...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Well..... you do have symptoms. Chronic IBS and D isn't normal. You normally would then, with the symptoms and the one positive, get a biopsy. Or at least a gene test. But it is possible to have celiac or non celiac gluten intolerance, and not test out positive on it for one or both. But the symptoms AND the one near positive... I guess they make more money selling you IBS drugs ? :angry:<_< Or you could be on the edge of developing damage. Like, you have to be only half dead to get on track to get the full diagnosis. :blink: What about family history of medical problems, and your ethnic heritage ?

If they will not do a biopsy, you can either switch doctors, or trial a gluten free diet yourself and see if you feel any differently. I missed my formal diagnosis because the doctor(s) I had at the time, (in the rotten HMO and then in another less than stellar insurance) I was getting very sick, refused to listen to my positive response to diet, and did not recognize the neurological form of celiac damage and would not diagnose, even with the scan showing brain lesions. :ph34r: Years later, (I think it was about 5 years into the gluten free diet) I was tested by a different doctor, with a celiac blood panel, and of course came back negative at that point, (yeah, see, I do stick to my diet, LOL) but I don't have any problems accepting that I have a "gluten" problem. I don't know if I would have showed intestinal damage or not, but I had so many other symptoms other than the classic "weight loss," such as bone loss, heartburn, kidney problems, ataxia, numbness, vision problems, etc, who knows. The fact that I am getting more sensitive to cross contamination as I get older is another hint, that doesn't happen with regular people, who can switch back and forth. So, if you can't get a biopsy and end up going gluten free for a month, and then reintroduce it, and subsequently feel rotten, that's another sign.

vtphd Newbie

Thanks Takala!

Well I guess I should say I had post-viral gastroparesis (slow stomach emptying/nausea/D etc. after a really bad norovirus) about 8 years ago which is why I have the diagnosis of "IBS" still to this day -- most gastroparesis never goes away but does get better. The Elavil is cheap haha $3 a month so I'm OK with that and it also treats mild anxiety.

Nope, no family history. I'm white Caucasian with an Italian/English heritage. Thanks for sharing your story -- I actually don't have any other "classic" symptoms so maybe you are right that I am on the "edge." No they won't do a biopsy, so yes, I'll request the DNA test! What exactly would the DNA test show -- just a susceptibility to celiacs correct?

I just find it strange only one out of all the ones is possibly positive. So if I decide to go on my merry way after doing the DNA test, how often should one be re-tested?

I really appreciate all the help! :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.