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

Testing Done.

jenny2

Recommended Posts

jenny2 Rookie
jenny2
Posted

can someone tell me if my blood tests come back negative for Celiac disease should i ask the doc for a upper endoscopy done? i had negative blood tests for celiac 8 years ago but postive upper endoscopy with flat villi. the docs thought that i didnt have celiac so i have continued to eat gluten for 8 years. flashforward to today, i am having alot of trouble with losting weight, and digestive issues. i just need so advice, thanks

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

If you had a positive biopsy there is a good chance you have celiac. Have you had the blood tests redone or did you get a copy of them? Some doctors will call a low positive negative. You might want to get bloodwork redone and then give the diet a good strict try no matter what the results. Or you could just go gluten free. Since both blood and biopsy have high rates of false negatives but not false positives the positive biopsy was significant in spite of the negative blood tests. Many doctors would have diagnosed with the positive biopsy since that has been considered the 'gold standard' for diagnosis.

JoshB Apprentice
JoshB
Posted

False positive biopsies are possible, but they would could involve some other fairly serious issue, and you ought to know if that was the case.

The more common cause of false positive is lab mistake; apparently it's really easy to flip the sample the wrong direction and hide the villi (Open Original Shared Link). Maybe that's what the doctor thinks happened? Or maybe your positive was only for minor changes that can be explained by several different conditions?

I'd be asking your doctor to explain why he thought you were negative despite the biopsy. There should probably be some answer other than "Oh... Well, the blood work wasn't positive."

jenny2 Rookie
jenny2
Posted
  • Author

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

MissKris2 Newbie
MissKris2
Posted

Oh, wow. I hope the blood tests clear things up for you. Between your symptoms and the positive biopsy you had before, it sure sounds like celiac.

Roda Rising Star
Roda
Posted

Yes hon, go gluten free you've got nothing to loose except maybe your debilitating symptoms.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

Wow...that's a huge weight loss, hun! :o When you say you were retested on friday, do you mean blood tests? Hopefully you will get some answers, but even if they are negative, you should still give the gluten free diet a good try (2-3 months). Sometimes gluten intolerance doesn't show up in your blood work, but it still wreaks havoc on your body. :(

Definately go gluten free, no matter what the test says.

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

Celiac.com Sponsor (A8-M):


jenny2 Rookie
jenny2
Posted
  • Author

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

ravenwoodglass Mentor
ravenwoodglass
Posted

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

If you are going to have an endo do keep eating gluten until that is done. Even on gluten there is still a chance of false negatives with testing so when all testing is done give the diet a good strict try.

Archived

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

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


  • Member Statistics

    • Total Members
      131,902
    • 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):


  • 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.