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

Screened Positive On 1/3 Antibody Tests

Deb O (UK)

Recommended Posts

Deb O (UK) Apprentice
Deb O (UK)
Posted

I've just been screened for celiac by blood test and was told that I scored positive on 1 antibody - the test looked for 3 antibodies and I was told by doctor that scoring positive on 2 gives a dx of celiac. He has advised me to follow a gluten-free diet and has referred me to a dietician (still waiting). :(

If I've not got celiac disease what does this mean? Does it mean I'm gluten intolerant or is this the same as celiac disease? I have had digestive discomfort for around 20 years and this is why I went to see doctor. However, since reading up about celiac I am amazed at how many other symptoms I have particularly lethargy/ tiredness/ irritability/ prone to low mood / mood swings / aching muscles / joint pain / tingling in fingers / foggy head and probs with concentration.

I feel like I'm in a 'no-mans land' - I know I shouldn't be eating gluten, but am waiting to see dietician.

On a positive note, I'm quite excited about going guten-free as I'm inspired by reading about how many people feel so much better after eliminating gluten :)

I would welcome any feedback

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

Celiac.com Sponsor (A8-M):


eKatherine Apprentice
eKatherine
Posted

It could be that you're gluten intolerant, but it hasn't progressed to the serious illness, or celiac stage. It doesn't really matter, just as long as you keep your diet under control your health will improve and it shouldn't bother you.

Chelle15 Apprentice
Chelle15
Posted

I've just been screened for celiac by blood test and was told that I scored positive on 1 antibody - the test looked for 3 antibodies and I was told by doctor that scoring positive on 2 gives a dx of celiac. He has advised me to follow a gluten-free diet and has referred me to a dietician (still waiting). :(

If I've not got celiac disease what does this mean? Does it mean I'm gluten intolerant or is this the same as celiac disease? I have had digestive discomfort for around 20 years and this is why I went to see doctor. However, since reading up about celiac I am amazed at how many other symptoms I have particularly lethargy/ tiredness/ irritability/ prone to low mood / mood swings / aching muscles / joint pain / tingling in fingers / foggy head and probs with concentration.

I feel like I'm in a 'no-mans land' - I know I shouldn't be eating gluten, but am waiting to see dietician.

On a positive note, I'm quite excited about going guten-free as I'm inspired by reading about how many people feel so much better after eliminating gluten :)

I would welcome any feedback

How frustrating! Why can they never tell you what the results mean! I came back with 2 positive markers for Celiac. But still had no idea if that meant I had it or not. It seems that no one wants to commit to telling you what is wrong. I would call the doctor and ask directly, what does this mean!

floridanative Community Regular
floridanative
Posted

Oh my the stupidity of doctors never ends does it.......I had a full Celiac panel run, which was six test/antibodies in all. I had ONE postive result for Celiac. After insisting on having the biopsy (had anemia which came out of nowhere, and some bloating) my results showed severely damaged villi. Boy was that doc's face red when he called to tell me I had Celiac. Of course I couldn't see his face but it was red, trust me. His uncomfortableness eating all that crow was palpable over the phone. I'm sorry to tell you but you probably have Celiac disease or you're gluten intolerant, which you know yourself already. Either way a gluten free diet is the only known treatment. Good luck getting answers.

jabberwife Explorer
jabberwife
Posted

hang in there. I'm in the same boat. I scored negative on blood tests and Enterolab (but I did notice that although both times, my IgA were in the normal range, the blood test showed a 1 unit read, and the Enterolab showed a 6, a year and a half later. Does that mean anything??) I did come up with 2 DQ1 genes (not the major ones for Celiac, but still predisposed) and my sister, brother, and father all have it. So....after visiting my doc, he's told me to go BACK on the diet (I did for almost a month before with some weird results, one really bad result to a bagel, but then when I went off...some IBS troubles but not dramatic problems) for 90 days. So I will. I wonder if a colonoscopy will help...but I can do a diet without having to go through that, so it sounds preferable to me!

Deb O (UK) Apprentice
Deb O (UK)
Posted
  • Author

Hi there

I don't know what DQ1 genes are, there was no mention of this by the doctor (UK) and no suggestion of further tests.

I'm just hanging about now waiting to see the dietician - I suppose I could go gluten-free on my own before seeing the dietician, but I'm kinda anxious about it, I've started to buy in some gluten-free stuff but I'm scared that when I start there's no going back and I'm not comfident that I know what to do yet.

Thanks to all of you who replied to my message! :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      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
      New (possible) celiac diagnosis

      By Judy M · Posted

      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
      Patiently Waiting to See Results

      By Scott Adams · Posted

      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
      Gluten free beer ?

      By Scott Adams · Posted

      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.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.